tag:blogger.com,1999:blog-16507172714074289852024-03-27T16:53:20.075-07:00ALS and Wellness BlogDiagnosed with ALS in 2010, Dagmar shares wellness and motivation for persons living with ALS, MND (Amyotrophic Lateral Sclerosis also known as Lou Gehrig's disease) their caregivers, family, and friends! Because - - You CAN be WELL while living with ALS.
http://www.alsandwellness.blogspot.com Unknownnoreply@blogger.comBlogger119125tag:blogger.com,1999:blog-1650717271407428985.post-19579731555727111522024-03-26T16:07:00.003-07:002024-03-26T16:07:43.622-07:00How I Live with Gravity, Coincidence, and ALS<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5RwHnV3IsjpxyblWUCno-Foc9QO0Kp2bvdgyaUrntbrTZ0tmhJ1M-ZM6uPrwD3Othg71ixH5ymufO7Cthdjq3Sa4-vUwxU1ww96Rcfyxv53srCoIOpBxaaU53FcjHKCgP_Sa4yyB0r3G1IIjhxg8nHckJDtTPvXkTCE5780LXr8JN_xmRPBdjLhQfNn-U/s940/misc%20FB%20blog%20(3).png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="788" data-original-width="940" height="536" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5RwHnV3IsjpxyblWUCno-Foc9QO0Kp2bvdgyaUrntbrTZ0tmhJ1M-ZM6uPrwD3Othg71ixH5ymufO7Cthdjq3Sa4-vUwxU1ww96Rcfyxv53srCoIOpBxaaU53FcjHKCgP_Sa4yyB0r3G1IIjhxg8nHckJDtTPvXkTCE5780LXr8JN_xmRPBdjLhQfNn-U/w640-h536/misc%20FB%20blog%20(3).png" width="640" /></a></div><br /><p></p><p class="MsoNoSpacing" style="text-align: justify;">I’ll admit that during my high school days, when our
studies turned toward physics, I didn’t pay much attention. Gravity, the
invisible force that keeps us on the ground and makes things fall, seemed
so <i>bor-ring. </i>But in 2010, when I was diagnosed with ALS, the
condition put me through an intense refresher course in exactly that: GRAVITY.<o:p></o:p></p><h3 style="text-align: justify;">What happened?</h3><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;"><o:p> </o:p>A walk up a hill suddenly felt like I was mountain
climbing, and my coffee mug felt as heavy as a barbell. Gravity tugged my
balance as well. A simple trek across the living room morphed into me grabbing
nearby furniture and lurching as if I were on the deck of a ship on the high seas.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">Naturally, I blamed everything and everyone else. I mean,
who cranked up Earth’s gravity anyway, and ...why me?</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">Adding to my worries, I read that my form of the
disease, <a href="https://alsnewstoday.com/forms-of-als/sporadic-als/">sporadic
ALS</a>, usually develops in patients who are in their 50s and 60s, right about
the same time as the signs of aging appear. These are signs like having less
energy, feeling weak, and having balance issues.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">At 59, I second-guessed every muscle twitch and fumbling
stumble. I’d wonder, “Maybe it’s not ALS, maybe I’m just aging. Or, is it ALS?”</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">Like many who live with ALS, I became a worrying,
hyper-vigilant patient, constantly researching symptoms on the internet.
Everything that happened during my day became either a cause or effect of ALS.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">When my pencil rolled off the table, the pages of a
catalog wouldn’t separate, or a Post-it note stuck to my fingers, what did I
do? Yup, I blamed stupid ALS for making things go wrong.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">But in reality, it was just plain old gravity, along with
a few doses of coincidence — events that had no connection to each other.</p><p class="MsoNoSpacing"><o:p></o:p></p><h3 style="text-align: justify;">What did I do?</h3><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">I had to bring my thoughts back into balance because I
knew that worry is helpful only if it leads to change, not if it turns into
obsessive thoughts.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">As I wrote in the blog post titled “<a href="https://alsandwellness.blogspot.com/2022/06/the-als-game-board-of-life.html"><b>The
ALS Game Board of Life</b></a>,” we can’t control life’s changes, but we can
make the best of our changed circumstances and adopt a new perspective. Here’s
how I do it:</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: justify; text-indent: -0.25in;"><span style="font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->When I’m stressed and ready to lay blame on
someone or something, I stop and ask myself if this event was just a
coincidence or truly related to ALS.<o:p></o:p></p><p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: justify; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->If I’m stuck in a “what-if” moment, I try <b><a href="https://alsandwellness.blogspot.com/2015/08/how-what-who-als-stress-management.html">to
figure out the next step</a> </b>and find a solution. That may be thinking
through contingency plans or asking for help from caregivers or family.<o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">Coincidences are inevitable, and we certainly live with
gravity. Try my strategies to help dissolve your worries and live well
while living with ALS.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: center;"><o:p><b>------------------------------</b> </o:p></p><p class="MsoNoSpacing">FOR MORE ON THIS TOPIC, I SUGGEST THESE POSTS</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing"><a href="https://alsandwellness.blogspot.com/2022/08/banishing-my-als-thought-loops-and.html"><b>Banishing
My ALS Thought Loops and Living One Day at a Time</b></a><b><o:p></o:p></b></p><p class="MsoNoSpacing"><a href="https://alsandwellness.blogspot.com/2021/11/how-i-avoid-sticky-points-in-my-day.html"><b>How
I Avoid the Sticky Points in My Day</b></a><b><o:p></o:p></b></p><p class="MsoNoSpacing"><br /></p><p class="MsoNoSpacing"><o:p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq6iqXA-rn0Wt64mszwAv-mDPQ16lRDb__duJfCZQF0h4b1RXmizpgRUxZ3WK1n-vSDFGv96IHJdpf3SGk1co7So5XZP2_AduHJLtCio9rV7Xgr28RnedvZTUApIHoqZHS13ZUvQ-plYssMz7qoUhBA5GMjdKhyphenhyphenPzpBTWJsZaKY-U1l7Qgm-5OZVJx51Xi/s664/BB2.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgq6iqXA-rn0Wt64mszwAv-mDPQ16lRDb__duJfCZQF0h4b1RXmizpgRUxZ3WK1n-vSDFGv96IHJdpf3SGk1co7So5XZP2_AduHJLtCio9rV7Xgr28RnedvZTUApIHoqZHS13ZUvQ-plYssMz7qoUhBA5GMjdKhyphenhyphenPzpBTWJsZaKY-U1l7Qgm-5OZVJx51Xi/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS and Wellness Blog</td></tr></tbody></table><br /> </o:p></p><p style="text-align: center;"><i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="font-size: large;">Worry does not empty
tomorrow of its sorrow. It empties today of its strength.</span></span></i></p><p style="text-align: center;"><i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="font-size: medium;">Corrie Ten Boom</span><o:p></o:p></span></i></p><p><i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><br /></span></i></p><p><i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><br /></span></i></p><p><i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><br /></span></i></p><p><i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">A version of this
post first appeared as my column on the </span></i><a href="https://alsnewstoday.com/columns/living-with-gravity-diagnosis-symptoms/ " target="_blank"><i>ALS News
Today </i></a><i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">website.</span></i></p><p style="text-align: center;">
</p><p><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"> </span></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1650717271407428985.post-69387720788702226942024-03-18T10:26:00.001-07:002024-03-26T16:08:00.199-07:00How I Fine-tune the Voices in My Head, So I Can Live with ALS<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9G4h5RkOS37NHJW9BViP_MZb5ZM6wosLsF4lozyOZF2r1L-qcMKBAWMXpRynAzUl5pW1yzUgmgq_O5UsrinUFDMNWbwzzRTYyV2-WwnkAKQa6f3SDyZaZk-597pUhlaOCWnOLU2efC0PK23bX1YymvCsoUn4BSih18W1PCv36oivQLRatwVHC-Kwk13Uu/s940/misc%20FB%20blog%20(3).png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="788" data-original-width="940" height="536" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9G4h5RkOS37NHJW9BViP_MZb5ZM6wosLsF4lozyOZF2r1L-qcMKBAWMXpRynAzUl5pW1yzUgmgq_O5UsrinUFDMNWbwzzRTYyV2-WwnkAKQa6f3SDyZaZk-597pUhlaOCWnOLU2efC0PK23bX1YymvCsoUn4BSih18W1PCv36oivQLRatwVHC-Kwk13Uu/w640-h536/misc%20FB%20blog%20(3).png" width="640" /></a></div><p></p><p style="text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">I’ll admit to hearing voices — the voices in my head, that is.<o:p></o:p></span></p><p style="text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">We’re all listening to our mental voices. </span></p><p style="text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">It’s the constant
chatter of inner dialogue or self-talk that leapfrogs through our
thoughts, beliefs, questions, and ideas. Mostly the chatter is background
noise, accompanying our daily activities and conversations.<o:p></o:p></span></p><p style="text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">My own self-talk rose to a loud roar in the days and months
following my diagnosis of ALS. I’d ask myself over and over what I did to cause
this disease. I got caught up in never-ending </span><a href="https://alsandwellness.blogspot.com/2022/08/banishing-my-als-thought-loops-and.html">thought
loops</a><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"> and imagining worst-case scenarios for my future.
Fortunately, my early training in </span><a href="https://alsandwellness.blogspot.com/2017/04/how-to-focus-pay-attention-mindfulness.html">mindfulness</a><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"> soon
kicked in.<o:p></o:p></span></p><p style="text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">When I taught wellness during my professional days, the lessons
focused on learning how to counter distractions and keep thoughts in the
present moment. Little did I know how important these skills would be to me now
that I live with ALS.<o:p></o:p></span></p><h3 style="text-align: justify;"><b><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">How mindfulness helps me</span></b></h3><p style="text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">At first, I used mindfulness to help me cope with my ALS
symptoms. For example, paying attention to my actions helped me avoid falling,
choking on food, or spilling drinks. But just as important, being mindful also
includes managing one’s self-talk to change the inner dialogue from negative to
positive, and even to turn the volume way down low.<o:p></o:p></span></p><p style="text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Recently, studies have been published showing the </span><a href="https://alsnewstoday.com/news-posts/2017/05/31/mindfulness-depression-quality-of-life-amyotrophic-lateral-sclerosis/">benefits
of mindfulness for ALS patients</a><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">, including reducing
anxiety and depression and improving quality of life. These all validate my
experiences from practicing mindfulness in the 14 years I’ve been living with
ALS.<o:p></o:p></span></p><p style="text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">What does “turning down the volume” on your self-talk feel like?<o:p></o:p></span></p><p style="text-align: justify;"><i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Take in a slow breath and slowly exhale. Wiggle your toes and
listen to the sounds around you. <o:p></o:p></span></i></p><p style="text-align: justify;"><i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Poof! You are in the present moment. That’s how easy it is.<o:p></o:p></span></i></p><p style="text-align: justify;"><i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">... try it one more time and soon you'll be a pro!</span></i></p><h3 style="text-align: justify;"><b><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">The ALS battle</span></b></h3><p style="text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Negative self-talk can be internalized and it creates body-mind
stress. Adrenaline and cortisol released during the stress response can </span><a href="https://www.apa.org/research/action/immune">suppress the body’s immune system</a><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"> and </span><a href="https://www.pnas.org/content/110/41/16574.abstract">lead to
increased inflammation</a><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">. Additionally, heart rate,
blood pressure, and muscle tension are negatively affected by mental
stress.<o:p></o:p></span></p><p style="text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">What continues to surprise me is that so many in the ALS
community refer to the disease using terms of waging war in statements such as:<o:p></o:p></span></p><p style="text-align: justify;"><i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">“I’m in a constant battle waking up wondering what the day will
bring.”</span></i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><o:p></o:p></span></p><p style="text-align: justify;"><i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">“We admire our patients’ courage in their battle to fight ALS.”</span></i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><o:p></o:p></span></p><p style="text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Truth is, I’m not in a battle with anything. I’m not fighting an
enemy or waging war against a tide of invaders. I don’t wake up every morning
thinking, “OK, feet, put up your dukes, ’cause if you don’t start walking
right, we’re gonna have a real battle this time!”<o:p></o:p></span></p><p style="text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">I know my feet and legs aren’t at fault. More importantly, I’m
not at fault. This condition of ALS is happening on a deeper, cellular level.
It’s a part of me.<o:p></o:p></span></p><p style="text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Instead, I wake up every morning wondering how I can bring more
well-being into my day. I use the words compassion, kindness, calm, and
healing.<o:p></o:p></span></p><h3 style="text-align: justify;"><b><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Not all self-talk is bad</span></b></h3><p style="text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Another way I refocus my self-talk is when I’m in bed and the
lights are off. Instead of lying awake in the dark, </span><a href="https://alsandwellness.blogspot.com/2022/08/banishing-my-als-thought-loops-and.html">stuck in a
negative thought loop</a><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">, I fall asleep remembering the
day’s events and people with thoughts of gratitude. Knowing this is my habit of falling asleep forces me to actively take note of the good things as they happen
throughout my day. <o:p></o:p></span></p><p style="text-align: justify;"><a href="https://www.psychologytoday.com/us/blog/minding-the-body/201111/how-gratitude-helps-you-sleep-night">Studies
show</a><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"> that doing this helps us have positive
thoughts when drifting off to sleep, and we can even sleep better.<o:p></o:p></span></p><p style="text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Paying attention to the present moment, sidestepping
self-criticism, and practicing gratitude are all positive ways I use self-talk
to help me live with this challenging disease. Why not try it for yourself? </span></p><p style="text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">Together, we can learn to live well while we live with ALS.<o:p></o:p></span></p><p style="text-align: center;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><b>------------------------------------------</b></span></p><p class="MsoNoSpacing">FOR MORE ON THIS TOPIC, I SUGGEST THESE POSTS<o:p></o:p></p><p><a href="https://alsandwellness.blogspot.com/2015/06/how-to-always-remember.html">How to use
mindfulness for better living with ALS</a><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><o:p></o:p></span></p><p><a href="https://alsandwellness.blogspot.com/2015/03/how-to-apply-optimism-while-living-with.html">How to
Apply Optimism while Living with ALS (ALS Stress Management Tips)</a><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><o:p></o:p></span></p><p><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQsGImaLbHjYrezHOQ2IDPdl-JU3Nw-qBc0GlK2IkZUeI0yYaT-eX-zSE1n-tEhHLTgBgN7X3tqZXqVx1oN7xI-jMNwsmSIQCvQhQpi8xad-C0SJE_G49wzSgSrU7_oMXdVxJ5m5_uljByQURs9g3xZRAMs34_IG-UtiNkmr2hqBquYj89nY5khWcG-WK-/s664/BB2.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQsGImaLbHjYrezHOQ2IDPdl-JU3Nw-qBc0GlK2IkZUeI0yYaT-eX-zSE1n-tEhHLTgBgN7X3tqZXqVx1oN7xI-jMNwsmSIQCvQhQpi8xad-C0SJE_G49wzSgSrU7_oMXdVxJ5m5_uljByQURs9g3xZRAMs34_IG-UtiNkmr2hqBquYj89nY5khWcG-WK-/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS and Wellness Blog</td></tr></tbody></table><br /> </span></p><p><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><br /></span></p><p style="text-align: center;"><i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="font-family: georgia; font-size: large;">"Talk to yourself like you would to someone you love.”</span></span></i></p><p style="text-align: center;"><i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><span style="font-family: georgia; font-size: medium;">Brene’ Brown</span></span></i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><o:p></o:p></span></p><p>
</p><p><i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><br /></span></i></p><p><i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;"><br /></span></i></p><p><br /></p><p><i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">A version of this post first appeared as my column on
the </span></i><a href="https://alsnewstoday.com/columns/self-talk-inner-dialogue-fine-tuning-voices/" target="_blank"><i>ALS News Today </i></a><i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin;">website.<o:p></o:p></span></i></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1650717271407428985.post-83166759684089285232024-03-04T15:10:00.001-07:002024-03-18T10:26:46.333-07:00ALS and My Hardly Mobile Phone<p></p><div style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJiQr2yzcW9XNdTpIc6VLYYaJLhNU9gGpB744W8nVOUZNa8dQOKCUT55YpvmC12EzUiUJhTFwckogTOd89ANoQ6CcNhr4FM6L38o4Bll-xNXFkgc45LhZGxATQuXRe10SQhG5IF9uSz8QpPr5NgLZoxZLK0ODa_plk18viDQf0wsTtB14XEevZY9VoA6tr/s940/misc%20FB%20blog%20(3).png" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="788" data-original-width="940" height="536" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgJiQr2yzcW9XNdTpIc6VLYYaJLhNU9gGpB744W8nVOUZNa8dQOKCUT55YpvmC12EzUiUJhTFwckogTOd89ANoQ6CcNhr4FM6L38o4Bll-xNXFkgc45LhZGxATQuXRe10SQhG5IF9uSz8QpPr5NgLZoxZLK0ODa_plk18viDQf0wsTtB14XEevZY9VoA6tr/w640-h536/misc%20FB%20blog%20(3).png" width="640" /></a></div><div style="text-align: center;"><br /></div><p></p><p class="MsoNoSpacing" style="text-align: justify;">Would it surprise you to learn that I check my cell phone zero times a day?<o:p></o:p></p><div>
<p class="MsoNoSpacing" style="text-align: justify;">All around me, people are texting, emailing, chatting,
and checking social media. Me? <i>Nada.</i> My eyes are forward,
watching the world. I’m embracing “the joy of missing out” — a state of mind
caused by my ALS.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<h3 style="text-align: justify;"><b>The value of emojis</b></h3><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">When I was diagnosed with ALS in 2010, smartphones were a
unique technology. As my symptoms progressed (including stiff, tight
muscles), smartphone owners honed their texting and swiping skills. To me,
their thumbs and fingers were tapping as fast as a line of <a href="https://www.rockettes.com/">Radio City Rockettes</a>!<o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">When friends or a family member sends me a text, I’m so
slow with my one-finger typing that before I can finish my reply, they have
sent two more comments and are on to a whole new topic! I have learned the
value of short words and adding lots of emojis.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;"><i>Dagmar’s tip: Just like when I’m speaking to someone
new and I let them know early in the conversation that I talk slowly - - when
texting a new acquaintance, I’ll type “have patience, I type slow.”</i></p>
<h3 style="text-align: justify;"><b>My version of mobile</b></h3><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Although a cellphone is referred to as a mobile device, I
can’t get mine to be as mobile as everyone else’s. Others carry their phone in
one hand while shopping, ordering, or being out and about.<o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Mine sits on my rollator. I follow the same rules as for
driving a car: “Two hands on the wheel, ma’am.” Both of my hands firmly grip my
rollator’s handlebars. When a call comes in, the sequence is: full stop, lock
handles, pick up the phone, and then talk. Reply to a text? Add <i>sit down</i> to
the previous sequence.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;"><i>Dagmar’s tip: I often answer and right away hit the “speaker”
button. This way I can talk without having to fumble the phone bringing it up
to my ear.<o:p></o:p></i></p>
<h3 style="text-align: justify;"><b>Who needs apps?</b></h3><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">My little phone has so few apps it qualifies as a <i>dumb
phone.</i> Texting, calling, and a camera are the only functions I need
and use.<o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">But I haven’t nailed down how to take a selfie. It’s that
ALS-thumb-finger-coordination problem. Whenever I line up the perfect shot, my
shaky hands delay hitting the button to produce interesting effects.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">“Oh, look! A photo of the ceiling. Oops, that’s a foot.
And I think that’s a random, uh, blurry thing.” </p><p class="MsoNoSpacing" style="text-align: justify;">I’ve often, asked someone else to
snap the photo. <o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;"><i>Dagmar’s tip: I use the camera’s count-down timer,
setting it to 10 seconds. This way, I have enough time (and a warning) before
the “click” to steady my hands and/or keep the object in view.</i></p>
<h3 style="text-align: justify;"><b>What can we do?</b></h3><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">It’s no secret that most people are addicted to their
smartphones. Fear of missing out (FOMO) drives most of the checking and
rechecking. Too much screen time can have negative effects on our mood and our
social interactions. A few years ago, <a href="https://alsnewstoday.com/2018/09/04/als-social-media-instagram-facebook-i-took-month-long-break-heres-what-happened/">I
took a month away from Facebook</a> and felt great afterward. Plus, I
still had my friends when I returned.<o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">You could say that my current relationship with my
cellphone has health benefits. Just like those in the <a href="https://www.calnewport.com/about/">digital minimalism movement</a>, I’m
reducing my attachment to unneeded apps and my FOMO.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">So, what do I do while everyone around me is staring at
their phone?</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: justify; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->When riding in the car, I look out the windows
and watch the scenery.<o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: justify; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->When at a restaurant, I notice the décor.<o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: justify; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->When outside, I enjoy nature.<o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: justify; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->I practice an eyes-open mini-meditation and
focus on my breathing.<o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: justify; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->I knit.<o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: justify; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->I embrace the joy of missing out - - because
it’s a form of self-care.<o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">And I know that no matter the challenge, I <i>can</i> live
well while living with ALS.</p><p class="MsoNoSpacing" style="text-align: center;"><b>-----------------------------------</b></p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing"><o:p> <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKOMK6OrPtD2NULJ_prHI81apWMIvcrd3RUCPdaNbpHCYUygYYwSvMZURSIjpf0RiUwa2Dcaym4my7Grs9uCPMlNqqLPZsdLuSAo-W1YtSC3hwQ742f2ZkZNl3lU2RJ4NlXu7lH1O1vNOicPmNZOniBrcKOE329xp19fUFcuJwvhq5G3Mh3ZacrYDKneX4/s664/BB2.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKOMK6OrPtD2NULJ_prHI81apWMIvcrd3RUCPdaNbpHCYUygYYwSvMZURSIjpf0RiUwa2Dcaym4my7Grs9uCPMlNqqLPZsdLuSAo-W1YtSC3hwQ742f2ZkZNl3lU2RJ4NlXu7lH1O1vNOicPmNZOniBrcKOE329xp19fUFcuJwvhq5G3Mh3ZacrYDKneX4/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS and Wellness Blog</td></tr></tbody></table><br /></o:p></p></div><p class="MsoNoSpacing" style="text-align: center;"><i><span style="font-family: georgia; font-size: large;">JOMO (Joy of Missing Out)<o:p></o:p></span></i></p><p>
</p><p class="MsoNoSpacing" style="text-align: center;"><i><span style="font-family: georgia; font-size: large;">"Feeling content with staying in and disconnecting as a
form of self-care"</span></i><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: center;"><i><span style="font-family: georgia; font-size: large;"><br /></span></i></p><p class="MsoNoSpacing" style="text-align: center;"><i><span style="font-family: georgia; font-size: large;"><br /></span></i></p><p class="MsoNoSpacing" style="text-align: center;"><i><span style="font-family: georgia; font-size: large;"><br /></span></i></p><p><a name="_Hlk154666128"><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">A version of this post first appeared as my column on
the </span></i></a><a href="https://alsnewstoday.com/columns/cellphone-mobile-apps-challenges-fomo-technology-psychology/" target="_blank"><i><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;">ALS News Today </span></i></a><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">website.<o:p></o:p></span></i></p>Unknownnoreply@blogger.com4tag:blogger.com,1999:blog-1650717271407428985.post-7670165053862562682024-02-27T14:25:00.001-07:002024-03-04T15:10:31.103-07:00My ALS Strategy to Avoid Being a ‘UFO’: I’m a WIP (Work in Progress)<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcVdR-casKftYOOteizTY1o3vIy7iyIPkTsvET1eLH_VBXciMsrH9tYZDvUmF6Ch5JAlDnpNowmUQRC0lAsmenT7smcrJF0rzeUC94pV40dSIubEaQbOwMXHXvWVS6-7EPIPx92p8yvU70wXnrhCauHB1rDXH2qu7JB0sXQ5eZukQKn5feqJpLyJo6mWet/s940/misc%20FB%20blog%20(3).png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="788" data-original-width="940" height="536" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcVdR-casKftYOOteizTY1o3vIy7iyIPkTsvET1eLH_VBXciMsrH9tYZDvUmF6Ch5JAlDnpNowmUQRC0lAsmenT7smcrJF0rzeUC94pV40dSIubEaQbOwMXHXvWVS6-7EPIPx92p8yvU70wXnrhCauHB1rDXH2qu7JB0sXQ5eZukQKn5feqJpLyJo6mWet/w640-h536/misc%20FB%20blog%20(3).png" width="640" /></a></div><p></p><p><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt; text-align: justify;">I’m
always surprised how something simple and totally unrelated to </span><span face=""Arial",sans-serif" style="font-size: 11.5pt; text-align: justify;">ALS<span style="color: #212121;"> can change my perspective about </span>living
with the disease<span style="color: #212121;">. For example, who knew that a bag
full of unfinished knitting and crocheting projects could lift me out of a
temporary mental funk, return me to feeling positive and hopeful, and restore
my humorous outlook on life?</span></span></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">But
it did. And I’m having so much fun with my new mental game that I think it
might help you, too. Here’s what happened:<o:p></o:p></span></p><p style="text-align: justify;"><b><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Meet
my bag of UFOs</span></b><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><o:p></o:p></span></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Lurking
on the floor near my sewing machine is a large canvas bag where I put my
“UFOs.” (That’s knitting and crocheting slang for unfinished projects.) Mine is
a jumble of projects I quit working on because they were either too challenging
or time-consuming, or they just weren’t turning out as I’d hoped.<o:p></o:p></span></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Recently,
I had one of those weeks where everything seemed <i>off.</i> My to-do list was
way too long plus, frequent interruptions kept bursting in, and I couldn’t focus on
anything! And, I’d grown tired of my current evening knitting project. So, into
the UFO bag it went.<o:p></o:p></span></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">But
now, as I peered into the bag, the thought suddenly struck me that it was like
a waiting room of sorts, not much different than the concept of an ALS waiting
room I </span><b><a href="https://alsandwellness.blogspot.com/2022/04/are-you-stuck-in-als-waiting-room.html"><span face=""Arial",sans-serif" style="font-size: 11.5pt;">previously wrote about</span></a></b><b><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">.</span></b><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"> The ALS
waiting room is how I describe the mental space that many with the disease
retreat to when they feel cast aside, frustrated, tired of waiting for help,
and ready to give up.<o:p></o:p></span></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Hmm.
Perhaps these people are <i>ALS UFOs?</i><o:p></o:p></span></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Following
the parallels suddenly being drawn in my mind, I thought, “What’s the opposite
of being a UFO?” In knitting and crocheting slang, that’s a “WIP,” or work in
progress.<o:p></o:p></span></p><p style="text-align: justify;"><b><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Being
an ALS WIP (work in progress)</span></b><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><o:p></o:p></span></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">I
decided that no matter the daily challenges coming my way, I’d consider
myself a long-term <i>work in progress - - </i>and I liked that mental image. <o:p></o:p></span></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">It
gave me permission to have days when I get a lot done, including all my exercise
routines and a completed to-do list. It also allows for the days when it feels
like an uphill battle and I have to adapt and be flexible or </span><b><a href="https://alsandwellness.blogspot.com/2023/01/how-to-revive-your-daily-life-routines.html"><span face=""Arial",sans-serif" style="font-size: 11.5pt;">start all over again</span></a></b><b><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">.</span></b><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><o:p></o:p></span></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">When
knitting, I often modify the printed pattern of my scarf or shawl to
accommodate the yarn I own or to </span><b><a href="https://alsandwellness.blogspot.com/2023/10/knitting-my-way-to-solution-for-chills.html"><span face=""Arial",sans-serif" style="font-size: 11.5pt;">better fit my needs</span></a></b><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">. It’s
the same with ALS when I know I can adapt, learn, and survive.<o:p></o:p></span></p><p style="text-align: justify;"><b><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Don’t
be a UFO</span></b><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><o:p></o:p></span></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">We
all have times of frustration and discouragement, but my mental image of
being a work in progress will help change your perspective, as it did for me.
Just call me “WIP Dagmar!”<o:p></o:p></span></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">More
ideas, mental strategies, and inspiration can be found in my blog’s INDEX –
just look under <b><a href="https://alsandwellness.blogspot.com/search/label/Blog%20Index">“Stress Management
Tips.”</a> <o:p></o:p></b></span></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">We’re
all learning how to live well while living with ALS ---- I’m cheering for you!<o:p></o:p></span></p><p>
</p><p style="text-align: center;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"> <b>---------------------------------</b></span></p><p class="MsoNoSpacing"><b>FOR MORE ON THIS TOPIC, I SUGGEST THESE POSTS<o:p></o:p></b></p><p class="MsoNoSpacing"><b><a href="https://alsandwellness.blogspot.com/2022/06/the-als-game-board-of-life.html">The
ALS Game Board of Life</a><o:p></o:p></b></p><p class="MsoNoSpacing"><a href="https://alsandwellness.blogspot.com/2022/05/how-i-use-showing-up-to-help-me-live.html"><b> How
I Use ‘Showing Up’ to Help Me Live with ALS</b></a><o:p></o:p></p><p>
</p><p class="MsoNoSpacing"><o:p> <br /></o:p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrLnbuFRX0UQLubJ24X4CTkFu_e0PLu34v-0z3369Hl10dZKvRgJnquAatwbAFH4jiKTlV8QyHjwlaZSyVmNdxEhc26guPCN1Q8y8WFkYI22HbYyUzfJbmf9g_vmIipj3ihyphenhyphen_AHFfy4BmeZmF7ZjFz0yoN_W44pLQKrsPfsvDgtikFbQJUbYPWr0_sG6Xj/s664/BB2.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrLnbuFRX0UQLubJ24X4CTkFu_e0PLu34v-0z3369Hl10dZKvRgJnquAatwbAFH4jiKTlV8QyHjwlaZSyVmNdxEhc26guPCN1Q8y8WFkYI22HbYyUzfJbmf9g_vmIipj3ihyphenhyphen_AHFfy4BmeZmF7ZjFz0yoN_W44pLQKrsPfsvDgtikFbQJUbYPWr0_sG6Xj/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS and Wellness Blog </td></tr></tbody></table><br /><p></p><p class="MsoNoSpacing"><o:p><br /></o:p></p><p class="MsoNoSpacing" style="text-align: center;"><o:p><span style="font-family: georgia; font-size: large;"><i>"It doesn't matter how slowly you go, as long as you do not stop."</i></span></o:p></p><p class="MsoNoSpacing" style="text-align: center;"><o:p><span style="font-family: georgia; font-size: medium;"><i>Unknown</i></span></o:p></p><p class="MsoNoSpacing"><o:p><br /></o:p></p><p class="MsoNoSpacing"><o:p><br /></o:p></p><p class="MsoNoSpacing"><o:p><br /></o:p></p><p class="MsoNoSpacing"><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">A
version of this post first appeared as my column on the </span></i><a href="https://alsnewstoday.com/columns/als-strategy-avoid-ufo-im-work-progress/" target="_blank"><i><span face=""Arial",sans-serif" style="font-size: 11.5pt;">ALS
News Today </span></i></a><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">website.</span></i></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1650717271407428985.post-11007588250330922702024-02-19T14:15:00.001-07:002024-02-27T14:25:48.572-07:00Time Matters When Living with ALS<p></p><div style="text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaYTaPhnxBZb7kyo-Amc-ka3ChpoTdBVk4vgM0_m37dyYLBS6d8e5HUq2F0u7LJevAXqlIySGfwkq0hM_N0wKgd3smTUHeMZMW3lCULiYdPe45kZlYUjK1bd7GtXNw5Ah4xo0gAD3eYsFYKUGElO2bJ80vYB4SgB2EyaQJmHkckV4VOobqIGKqV6W3HJEQ/s940/misc%20FB%20blog%20(4).png" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="788" data-original-width="940" height="536" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaYTaPhnxBZb7kyo-Amc-ka3ChpoTdBVk4vgM0_m37dyYLBS6d8e5HUq2F0u7LJevAXqlIySGfwkq0hM_N0wKgd3smTUHeMZMW3lCULiYdPe45kZlYUjK1bd7GtXNw5Ah4xo0gAD3eYsFYKUGElO2bJ80vYB4SgB2EyaQJmHkckV4VOobqIGKqV6W3HJEQ/w640-h536/misc%20FB%20blog%20(4).png" width="640" /></a></div><p></p><p><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"> </span></p><div style="text-align: center;">
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Among
the many challenges I experienced during my early months with ALS was its
effect on my perception of time. <o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Before
ALS, I had pretty much meandered through life in full confidence that many more
years lie ahead of me. But with the onset of ALS, all that changed. The
elephant in the room became <i>time</i>. And when I heard the words <i>two-
to five-year life expectancy,</i> time suddenly became significant!<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">I
had two immediate reactions.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">I
fell into the common body-mind stress response of fight-flight-freeze. And then,
I began lamenting, <i>if only I’d known that was <b>the last time</b> I
would ever (dance, jog, drive a car, etc.), I would have paid more attention!
Now I don’t even have the memories!</i><o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Sound
familiar? Here’s how I worked my way out of both states.<o:p></o:p></span></p>
<h3 style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Flight-fright-freeze</span></h3>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">I
remembered from my wellness training that the body-mind stress response of
fight-flight-freeze is hardwired into our brains. It’s there to help us react
quickly to get out of or avoid dangerous situations. <o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">When
we sense a crisis, brain chemicals such as adrenaline and cortisol are
released, our bodies tighten up and we conserve needed energy, to help further,
even our immune systems shut down. All helpful when having to, say, exit a
burning building. But not helpful for the long-term stress of having to accept
and live with a serious illness.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Having
our body in a state of “high alert” is draining.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">I
knew that worrying, feeling anxious and angry <i>plus</i> having a
depressed immune system would not help my situation. Neither was withdrawing
from friends and family, feeling depressed, and just sitting, sitting, sitting.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">My
first step to stop my fight-flight-freeze stress response was to go directly
against the tide of emotions washing over me. I practiced deep, relaxed
breathing, followed a daily routine of movement, and began following guidelines
such as </span><a href="https://alsnewstoday.com/living-with-als/"><span face=""Arial",sans-serif" style="font-size: 11.5pt;">those</span></a><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"> found
in “Living with ALS<i>.”</i> Habits include good nutrition, regular
exercise, proper medication, use of medical equipment when recommended, and
attending an ALS clinic and its support groups.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Slowly,
I changed my attitude from <i>fleeing </i>ALS, <i>fighting</i> ALS,
and feeling <i>numb</i> about my ALS - - to learning to <i>live </i>with
ALS.<o:p></o:p></span></p>
<h3 style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">How
I saved new memories</span></h3>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">We
all fall victim to living each day on auto-pilot while life happens all around
us. We pay attention instead to smartphones and the constant babble, or
self-talk in our heads. Days are lost. Years are lost. Time is lost. Every moment we worry about the past or the future is a moment not
paying attention to <i>now.</i><o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">I’ve
heard it said, “You can make money, but can’t make time,” along with, “My
attention is a currency that I have to spend wisely.” I took those words to
heart.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">No
more <i>not</i> paying attention. No more lost memories. I decided to learn to
live in the <i>now</i> and be mentally present for everything yet to
come. Living in the <i>now</i> is also called mindfulness, and I knew
that meditating was an excellent way to learn to be mindful. But, to tell you
the truth, <b>I didn’t feel I had the time to meditate!</b> I had ALS, and the
clock was ticking!<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Luckily,
I found the program developed by </span><a href="https://langermindfulnessinstitute.com/ellen-langer/"><span face=""Arial",sans-serif" style="font-size: 11.5pt;">Ellen Langer</span></a><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">, called
“Active Mindfulness.” It’s a kind of fast-track method; instead of
practicing <i>how</i> to be mindful … you just begin doing it!<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Here’s
a quick example: <o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">While reading this sentence, allow your brain to be aware of the sounds in
the room around you, feel the weight of your body on the chair underneath you, and the temperature of the air on your skin. Continue to read while continuing to
feel an awareness of sounds, the air, and your body. <o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">The
shift you just felt in your awareness is active mindfulness. As opposed to just
reading and blocking out what’s happening around you. Langer, a PhD, refers to THAT
state of mind as - -being <i>mindless.</i><o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">She
received a grant from the ALS Association to </span><a href="https://www.ncbi.nlm.nih.gov/pubmed/25361013"><span face=""Arial",sans-serif" style="font-size: 11.5pt;">study mindfulness and ALS</span></a><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">, and the
results were impressive. Participants reduced their anxiety, depression,
burnout, and progression of ALS symptoms. Better yet, participants increased
memory, quality of life, their ability to cope, and overall well-being.<o:p></o:p></span></p>
<h3 style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">New
priorities</span></h3>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">I’ve
since made it a priority in my life to manage my stress and practice active
mindfulness. And, yes, I even have created newfound time to meditate! It’s all
become a reinforcing loop. The more I pay attention, the more I notice and hold
dear the deeply satisfying events happening in my life. <i>Ahhh!<o:p></o:p></i></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">I’ll
admit these were difficult habits to break and took dedicated hard work to
remember to build them into my day. But I am glad I did. I was diagnosed in
2010, and looking back, being mindful not only helped me create new memories,
but also kept me safe when walking, swallowing, sitting down, and using my
rollator.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Make
this year the one you are fully present for your most memorable moments. Not
only will it be a gift of health to your body and mind, but also it will be a
very wise way to spend your time.<o:p></o:p></span></p><p style="text-align: center;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><b>-------------------------</b></span></p><p class="MsoNoSpacing">FOR MORE ON THIS TOPIC, I SUGGEST THESE POSTS<o:p></o:p></p><p class="MsoNoSpacing"><a href="https://alsandwellness.blogspot.com/2015/01/your-attention-please.html"><b>Using
Active Mindfulness for ALS Stress Management</b></a><b><o:p></o:p></b></p><p class="MsoNoSpacing"><a href="https://alsandwellness.blogspot.com/2017/04/how-to-focus-pay-attention-mindfulness.html"><b>How
to Focus & Pay Attention; Mindfulness for pALS & cALS</b></a><b><o:p></o:p></b></p><p style="text-align: left;">
</p><p class="MsoNoSpacing"><o:p> </o:p></p><p class="MsoNoSpacing" style="text-align: left;"></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilRI64JOJJY1Rvx3BlSsmSzu6JObNdm6uS1h5cCeCo_Fr5GLG-JpSjF9_jEpL0VxIb2RyMdspVZBgy9P5GT0R1OTlVW5JK1qcKtZfBRa6nA2HmqLvKxE1Kq_XYGfIYUOrjmy44UFmVIa5ywOvSoo_kymp7OJXZBmg_rSvP5NXKwEgUbw1Xewt0SYizTmeR/s664/BB2.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilRI64JOJJY1Rvx3BlSsmSzu6JObNdm6uS1h5cCeCo_Fr5GLG-JpSjF9_jEpL0VxIb2RyMdspVZBgy9P5GT0R1OTlVW5JK1qcKtZfBRa6nA2HmqLvKxE1Kq_XYGfIYUOrjmy44UFmVIa5ywOvSoo_kymp7OJXZBmg_rSvP5NXKwEgUbw1Xewt0SYizTmeR/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS and Wellnes Blog</td></tr></tbody></table><br /><o:p><br /></o:p><p></p></div><p class="MsoNoSpacing" style="text-align: center;"><span style="font-family: georgia; font-size: large;"><i>"Wherever you go, there you are"</i><o:p></o:p></span></p><p>
</p><p class="MsoNoSpacing" style="text-align: center;"><span style="font-size: medium;"><span style="font-family: georgia;">Jon Kabat-Zinn</span><o:p></o:p></span></p><p class="MsoNoSpacing"><br /></p><p class="MsoNoSpacing"><br /></p><p class="MsoNoSpacing"><br /></p><p class="MsoNoSpacing"><br /></p><p><a name="_Hlk154666128"><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">A version of this post first appeared as my column on
the </span></i></a><a href="https://alsnewstoday.com/columns/with-als-time-becomes-precious-commodity-use-well/" target="_blank"><i><span face=""Arial",sans-serif" style="font-size: 11.5pt;">ALS News Today </span></i></a><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">website.<o:p></o:p></span></i></p><p><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><br /></span></i></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1650717271407428985.post-65941527495411542812024-02-12T15:11:00.002-07:002024-02-19T14:17:13.130-07:00The View From (Down) Here<p></p><div style="text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVAjXjtl5no58GMV-5yB1Kqxqh5aQ1myamB7PRkJ6LDCPagJRu8cRFg5FYelLfawH4vmPNOd3TciIJf79-2iWfQAQIYq1w18q65-5qWiaXXMOFM5bc5cTF-i66T3n4-jbX0kI5IbIBBO-3adu00LHzNbDBD4PnqeDhQJe-EYFHDVgnalAzdjb845eyk-b8/s940/misc%20FB%20blog%20(3).png" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="788" data-original-width="940" height="536" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVAjXjtl5no58GMV-5yB1Kqxqh5aQ1myamB7PRkJ6LDCPagJRu8cRFg5FYelLfawH4vmPNOd3TciIJf79-2iWfQAQIYq1w18q65-5qWiaXXMOFM5bc5cTF-i66T3n4-jbX0kI5IbIBBO-3adu00LHzNbDBD4PnqeDhQJe-EYFHDVgnalAzdjb845eyk-b8/w640-h536/misc%20FB%20blog%20(3).png" width="640" /></a></div><div style="text-align: center;"><br /></div><p></p><p class="MsoNoSpacing" style="text-align: justify;">Like many who live with ALS symptoms, I rely on
a <b><a href="https://alsandwellness.blogspot.com/2016/01/walk-this-way-als-humor.html">rollator</a></b>.
But when out and about and covering longer distances, I use a <b><a href="https://alsandwellness.blogspot.com/2021/08/give-mobility-scooter-try-it-can-be.html">mobility
scooter</a></b>. My scooter is perfect, and I feel comfortable and confident
going <i>almost</i> anywhere with it.<o:p></o:p></p><div>
<h3 style="text-align: justify;"><b>Recently I crossed that <i>almost </i>off
the list</b></h3>
<p class="MsoNoSpacing" style="text-align: justify;">Mobility scooters aren’t often seen at gala banquets with
everyone dressed to the nines, but a while back, I accepted an invitation to attend one.
Immediately, I stressed over the details. My outfit? I picked out something
fancy, yet comfortable enough to sit in all evening. My drink? I planned to
bring premixed <b><a href="https://alsandwellness.blogspot.com/2020/02/when-swallowing-becomes-als-issue.html">thickened
tea in a small travel mug</a>.</b> Would everyone stare at me and my scooter?
That one, I worried about a lot.<o:p></o:p></p>
<h3 style="text-align: justify;"><b>Nevertheless, I showed up and rolled in</b></h3>
<p class="MsoNoSpacing" style="text-align: justify;">It was the social hour, so I slowly circulated around the
room on my scooter. Or I tried to. I was eye level to belt buckles and fancy
handbags, and it was a challenge to catch anyone’s attention. I was virtually
invisible as people around me looked at each other and across the room, but
never down.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">The ballroom quickly filled, finally forcing me to stay
in one spot. So, I decided to make eye contact from a distance and let the
person come to me. It worked! Soon, a few friends gathered around and we began
to talk.<o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">But I was still a midget among giants. With all the
background noise, my words weren’t heard. I had to shout (or, my ALS-voice
version of a shout). To top it off, my neck began to ache from constantly
looking up.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<h3 style="text-align: justify;"><b><i>Was the whole night going to be a disaster?</i></b></h3>
<p class="MsoNoSpacing" style="text-align: justify;">Just then, an observant friend tactfully pulled a chair
next to me and sat down to continue talking. That prompted two others to pull
over chairs and we sat together, conversing eye to eye. <i>Ah-ha, a new tactic!<o:p></o:p></i></p>
<p class="MsoNoSpacing" style="text-align: justify;">The rest of the evening, whenever someone approached to
chat, I’d gracefully point to one of the chairs and invite them to sit down.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Not surprisingly, most everyone seemed immensely relieved
to sit for a few minutes. Plus, I appreciated having them on <i>my level</i> for
a relaxed conversation. The evening <b><a href="https://alsandwellness.blogspot.com/2020/08/celebrating-milestones-and-my-work-with.html">ended
on a high note,</a></b> and I returned home with many happy memories.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">For me, it was an important lesson that I <i>can</i> exert
control over my surroundings.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">For my friends, I hope they’ll remember to make an effort to sit the next time they find themselves chatting with a person using a
mobility scooter or wheelchair. <i>We “sitters” will appreciate you!</i></p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">The world may not be a perfect place (yet) for mobility
scooters, but if we meet in the middle, we <i>can</i> learn from one another…
and we can live well while living with ALS</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: center;"><o:p> <b>---------------------------------</b></o:p></p><p class="MsoNoSpacing">FOR MORE ON THIS TOPIC, I SUGGEST THESE POSTS </p><p class="MsoNoSpacing"><b><a href="https://alsandwellness.blogspot.com/2021/08/how-to-help-your-friends-when-they-ask.html">How
to Help Your Friends When They Ask How to Help You</a><o:p></o:p></b></p><p class="MsoNoSpacing"><o:p>
</o:p></p><p class="MsoNormal" style="background: white;"><b><a href="https://alsandwellness.blogspot.com/2022/12/how-i-charm-myself-through-holidays.html">How
I “C.H.A.R.M.” Myself Through the Holidays Living with ALS</a><o:p></o:p></b></p><p class="MsoNormal" style="background: white;"><br /></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM_-HNUXi2YX5AeibFXsD-THZ0YSVumbZ1svdRi7KhUeOjj4wk3Vqw380p_OwaIBvJEQ3UWvYkglv46B-UJoyTr4JYw6Z2DtIIUMG5Os-QIRXJm27KqiHrvCiHr7VMvde0hkvddgtrY2KBsDmAjjHwNSGgWf8Ei1hVpMoV6TQy0PH5KbqIjuNkXfiGMYj5/s664/BB2.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhM_-HNUXi2YX5AeibFXsD-THZ0YSVumbZ1svdRi7KhUeOjj4wk3Vqw380p_OwaIBvJEQ3UWvYkglv46B-UJoyTr4JYw6Z2DtIIUMG5Os-QIRXJm27KqiHrvCiHr7VMvde0hkvddgtrY2KBsDmAjjHwNSGgWf8Ei1hVpMoV6TQy0PH5KbqIjuNkXfiGMYj5/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS and Wellness Blog</td></tr></tbody></table><br /><p class="MsoNormal" style="background: white;"><br /></p>
<p class="MsoNoSpacing" style="text-align: center;"><o:p> </o:p><span style="font-family: georgia; font-size: large;"><i>Assertiveness is your ability to act in harmony with your
self-esteem without hurting others.</i></span></p><p class="MsoNoSpacing"><span style="font-family: georgia; font-size: large;"><i><o:p></o:p></i></span></p>
<p class="MsoNoSpacing" style="text-align: center;"><i><span style="font-family: georgia; font-size: medium;">Unknown</span><o:p></o:p></i></p>
<p class="MsoNoSpacing"><i> </i></p><p class="MsoNoSpacing"><i><br /></i></p><p class="MsoNoSpacing"><i><br /></i></p><p class="MsoNoSpacing"><i><br /></i></p>
<p class="MsoNoSpacing"><i>A version of this post first appeared as my
column on the </i><a href="https://alsnewstoday.com/columns/sit-scooter-wheelchair/" target="_blank"><i>ALS
News Today </i></a><i>website.<o:p></o:p></i></p>
<p class="MsoNoSpacing"><o:p> </o:p></p>
<p class="MsoNoSpacing"><o:p> </o:p></p></div><p><br /></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1650717271407428985.post-40211896671171165552024-02-05T10:38:00.006-07:002024-02-12T15:12:11.001-07:00Chasing Down My ‘Someday-itis’<p></p><div style="text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi98YCqiQ2wdnKOupmrLOONp-56cMuZkIYnCMM2igB8FI8sEol5dzC6Lu3b1CXhytxF_y7p9884Eg2Hsmni0ZJ9XbdpYlsrAAYrIyZ8J2Rwyts7le32xu-6DqxSlhljcjklmqF69ChTv4fD9rVttutESFftAr2KKTiMvB2-azCvuFhleEZSFrTLYl761B0d/s940/misc%20FB%20blog%20(3).png" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="788" data-original-width="940" height="335" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi98YCqiQ2wdnKOupmrLOONp-56cMuZkIYnCMM2igB8FI8sEol5dzC6Lu3b1CXhytxF_y7p9884Eg2Hsmni0ZJ9XbdpYlsrAAYrIyZ8J2Rwyts7le32xu-6DqxSlhljcjklmqF69ChTv4fD9rVttutESFftAr2KKTiMvB2-azCvuFhleEZSFrTLYl761B0d/w400-h335/misc%20FB%20blog%20(3).png" width="400" /></a></div><div style="text-align: center;"><br /></div><p></p><p class="MsoNoSpacing" style="text-align: justify;">My husband is one of those people who attack projects
from beginning to end with a laser-like focus. Me? Oh, I get things done —
well, eventually. Distractions, the tendency to overcommit plus a curiosity to
follow “the next big thing” all contribute to my meandering approach. </p><p class="MsoNoSpacing" style="text-align: justify;">Really, I
do plan to finish things — well, someday.<o:p></o:p></p><div>
<p class="MsoNoSpacing" style="text-align: justify;">However, since being diagnosed with ALS, I’ve been
trying hard to adopt my husband’s approach. Because with ALS, time is no longer a
limitless commodity, and safety concerns are a constant priority. <i>Do it
now, and get it done,</i> is my hope and aim.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<h3 style="text-align: justify;"><b>Taking care of my future self</b></h3><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">For example, a while ago, I noticed myself struggling to pull a shirt
off its hanger in my closet. That prompted me to become proactive and
reorganize my entire closet area and clothing choices with the goal of creating
accessibility — for me right now --- and for the future when someone else is
dressing me. It took me about a week and when it was all done, items that I’d
never use again were in donation bags ready to be dropped off. I even added a
chair nearer to the closet to safely sit on while dressing.<o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Similar projects were tackled with the same tenacity,
including clearing out the bathroom medicine cabinet and decluttering my
computer workspace, along with a collection of books and magazines waiting to be read. Convinced
that there were no more big issues to confront, I heartily congratulated the
new, efficient <i>Me.</i></p><p class="MsoNoSpacing" style="text-align: justify;"><i>Ta-da!</i></p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">But just last week, a midnight leak in our refrigerator’s
water line revealed I still had a few more hidden issues with “stuff.”</p><p class="MsoNoSpacing"><o:p></o:p></p>
<h3 style="text-align: justify;"><b>Outdated dream projects</b></h3>
<p class="MsoNoSpacing" style="text-align: justify;">We woke up to water covering the entire kitchen floor and
creeping into a small adjoining room — my craft room!<o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Languishing in that room was an embarrassing amount of
yarn, fabric, and leftover craft supplies. Granted, since the onset of my ALS
I’ve spent less and less time in that space. But I always promised myself that
someday I’d go in and finish knitting that sweater. Someday I’ll sort through
the paintbrushes. Someday I’ll rewind the ribbons. And on and on.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Surveying the water damage, my husband and I agreed the
immediate need was to move everything out of my craft room. In shock, I muttered, “This will
take me a few days.” But my husband’s expression plainly said, “Do it now!”</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">So, there I sat with three large plastic bags in front of
me, making split-second decisions. Keep? Throw? Donate? I tried my best to pretend I was a
declutter ninja. Yet worries bubbled up. Would I regret giving this item away?
Would I need it later? Would I end up having (gasp)... <i>nothing at all?</i></p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Yet through it all, I felt relief that I had the
opportunity to do the sorting and donating myself. I wasn’t leaving the task
for someone else.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<h3 style="text-align: justify;"><b>A happy ending</b></h3><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">The carpet and wall have since been repaired. </p><p class="MsoNoSpacing" style="text-align: justify;">I’m happy
knowing my donations will be enjoyed by other crafters. </p><p class="MsoNoSpacing" style="text-align: justify;">I’m happy I have a
small container of a few manageable projects that I can get to guilt-free,
whenever I choose. And I’m happy the whole experience is behind me.<o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">I know I may always have a little “someday-itis” hiding
in me. Do you have “someday-itis” too? Maybe it's time to tackle your decluttering projects. With patience and diligence, we can continue to live well
while living with ALS.</p><p class="MsoNoSpacing" style="text-align: center;"><b>-------------------------</b></p><p class="MsoNoSpacing">FOR MORE ON THIS TOPIC, I SUGGEST THESE POSTS<o:p></o:p></p><p class="MsoNoSpacing"><b><a href="http://alsandwellness.blogspot.com/2015/03/mental-space.html" target="_blank"><span face=""Arial",sans-serif" style="color: #2b00fe;">Mental
Space</span><span face=""Arial",sans-serif" style="color: #33aaff;"> </span></a><span class="MsoHyperlink"><span face=""Arial",sans-serif" style="color: #1a222a;">(and closet space)</span></span></b></p><p class="MsoNoSpacing">
</p><p class="MsoNormal" style="background: white;"><a href="https://alsandwellness.blogspot.com/2022/07/how-i-socked-it-to-als.html" target="_blank"><span face=""Arial",sans-serif" style="color: #2b00fe;"><b>How
I Socked It to ALS</b></span></a><span face=""Arial",sans-serif" style="color: #1a222a;"><o:p></o:p></span></p><p class="MsoNormal" style="background: white;"><br /></p><p class="MsoNoSpacing"><o:p></o:p></p></div><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZoRFNqao6t8sX5ELzUDipbfCYIRTeRrd4sbk9tQ04tE7YI8STUud63JK4eJSw72gWNlk6OjWscifd69shnpUec0ssp81YYuqg6bNxABL6UxDwzFaQNra1ClNRPMvDhc5oI4WyntDMT_DO_a3x2yDdgRnSsuJ3-vB2OzMlfFJiex5p36KTFz6xgzyxKNEq/s664/BB2.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZoRFNqao6t8sX5ELzUDipbfCYIRTeRrd4sbk9tQ04tE7YI8STUud63JK4eJSw72gWNlk6OjWscifd69shnpUec0ssp81YYuqg6bNxABL6UxDwzFaQNra1ClNRPMvDhc5oI4WyntDMT_DO_a3x2yDdgRnSsuJ3-vB2OzMlfFJiex5p36KTFz6xgzyxKNEq/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS and Wellness Blog</td></tr></tbody></table><br /><br /><p class="MsoNoSpacing" style="text-align: center;"><span style="font-family: georgia; font-size: large;"><i>Get into the habit of asking yourself, </i></span></p><p class="MsoNoSpacing" style="text-align: center;"><span style="font-family: georgia; font-size: large;"><i>“Does this support
the life </i></span></p><p class="MsoNoSpacing" style="text-align: center;"><span style="font-family: georgia; font-size: large;"><i>I’m trying to create?”<o:p></o:p></i></span></p><p class="MsoNoSpacing" style="text-align: center;"><i><span style="font-family: georgia; font-size: medium;">Unknown</span><o:p></o:p></i></p><p class="MsoNoSpacing"><i> </i></p><p class="MsoNoSpacing"><br /></p><p>
</p><p class="MsoNoSpacing"><i>A version of this post first appeared as my
column on the </i><a href="https://alsnewstoday.com/columns/someday-projects-donations/" target="_blank"><i>ALS News Today </i></a><i>website.<o:p></o:p></i></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1650717271407428985.post-55639497151717593492024-01-29T15:14:00.002-07:002024-02-05T10:38:52.191-07:00How to Push Back the Mental Walls of ALS<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuLupDKH5EOZnAT3QRddsuJVqB5DGy9WIHla-HANtfaRelSu0RiVIphwMSPDqchWRtjT88tY5XKdu5fzqDGILz5IWBqRJtekNncEnj0QrnmlMkfGW5x_vcUymDY5BGXy5PRnwgfm-QgVN2eAU7HlgFOzx9WAlmqIZ-XR2nxjlaDDw2hR147YOe6zHgZxwY/s940/misc%20FB%20blog%20(5).png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="788" data-original-width="940" height="335" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuLupDKH5EOZnAT3QRddsuJVqB5DGy9WIHla-HANtfaRelSu0RiVIphwMSPDqchWRtjT88tY5XKdu5fzqDGILz5IWBqRJtekNncEnj0QrnmlMkfGW5x_vcUymDY5BGXy5PRnwgfm-QgVN2eAU7HlgFOzx9WAlmqIZ-XR2nxjlaDDw2hR147YOe6zHgZxwY/w400-h335/misc%20FB%20blog%20(5).png" width="400" /></a></div><br /><div style="text-align: center;"><br /></div><div style="text-align: justify;"> <span style="text-align: left;">My ALS diagnosis was in 2010; in the months that followed,
I tried to learn as much as possible about the condition and how it would
affect my life going forward. Imagine my disappointment to discover that
medical experts knew almost everything about the physical progression of ALS
and what to expect at each stage of the disease. But, they were only beginning
to understand the emotional impact on patients living with ALS.</span></div><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing">The general assumption seemed to be that if a person has ALS,
then he or she must be <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4428059/"><b>depressed and
have a low quality of life.</b></a></p>
<h3 style="text-align: left;"><b>Why such low expectations</b></h3>
<p class="MsoNoSpacing">Experts pointed to the loss of mobility and how it
limited ALS patients from getting out and about and having social interactions.
Losing the ability to communicate was said to make patients mere observers of
conversations. Eating and swallowing issues narrowed their food choices. And learning
of the dismal longevity predictions (2-5 years), caused patients to adopt a
“why bother” attitude. I realized that being surrounded by such low
expectations, it was no wonder the world around ALS patients became smaller, and their “mental walls” closed in as well.<o:p></o:p></p>
<h3 style="text-align: left;"><b>What “other” experts said</b></h3>
<p class="MsoNoSpacing">Continuing my search I found studies that described the
complete opposite. <o:p></o:p></p>
<p class="MsoNoSpacing">For example, one study, <b>“</b><a href="https://jnnp.bmj.com/content/81/8/893.full"><b>Coping with amyotrophic
lateral sclerosis: an integrative view</b></a>” showed that severe functional
impairment does not automatically lead to a lower quality of life and symptoms
of depression.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing">Another study, <b>“</b><a href="https://archneur.jamanetwork.com/article.aspx?articleid=592678"><b>Survival
in Amyotrophic Lateral Sclerosis: The Role of Psychological Factors</b></a><b>”</b>
concluded that patients with ALS who demonstrated a positive psychological
well-being had a lower risk of dying and a longer survival time than those with
psychological stress.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing">These studies identified that the best predictors of
emotional well-being were:</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; mso-list: l0 level1 lfo3; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->the patient’s perception of social support,<o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; mso-list: l0 level1 lfo3; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->their coping skills, <o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; mso-list: l0 level1 lfo3; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->and their ability to assess and reframe the problem.
<o:p></o:p></p>
<p class="MsoNoSpacing">This to me, explained why I read about ALS patients who
accepted their diagnosis and seemed to effortlessly “move on” with their lives.
They “found a way,” adopted a personal mission, and continued to
participate in family and social events; many joined fundraising and awareness
campaigns as well. Others traveled, joined sporting events, and remained
noticeably positive, optimistic, and hopeful.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing">I wanted to follow their path.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing">This is why I am so adamant about the benefits of
adopting a <a href="https://alsandwellness.blogspot.com/2024/01/als-is-no-laughing-matter-but-little.html"><b>positive
mindset</b></a>, practicing reframing, and honing our coping skills. Because those
skills are all vital to <a href="https://alsandwellness.blogspot.com/2022/01/tap-into-your-inner-als-astronaut.html"><b>maintaining
resilience</b></a> and increasing longevity for those of us with ALS.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing">It is important to remain relevant, to matter, and to
have value.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing">I use the strategy of being <i>aware, accepting, </i>and <i>adapting. </i>Become aware
of what has changed, accept the change, and then adopt or try alternative solutions
that allow me to continue to live a meaningful life.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<h3 style="text-align: left;"><b>A few examples of Aware, Accept, Adapt</b></h3>
<p class="MsoNoSpacing" style="margin-left: 0.5in; mso-list: l2 level1 lfo1; tab-stops: list .5in; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->I enjoyed teaching and leading workshops at my
local fiber guild. When I began losing my ability to speak clearly, I looked
for other ways to remain involved. I transitioned to writing the monthly online
newsletter; a responsibility that kept me involved and active with the group. <o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; mso-list: l2 level1 lfo1; tab-stops: list .5in; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-bidi-font-weight: bold; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->In my pre-ALS life, exercise was an hour of yoga
or calisthenics, but now since my energy level has dropped significantly, one
hour is impossible. Rather than give up entirely on healthy movement, I break
my exercise routines into <b><a href="https://alsandwellness.blogspot.com/2022/03/my-tricks-for-adding-movement-to-my-day.html">short
15- to 20-minute bouts spread throughout the day</a>.<o:p></o:p></b></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; mso-list: l2 level1 lfo1; tab-stops: list .5in; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->When I began to <a href="https://alsandwellness.blogspot.com/2020/02/when-swallowing-becomes-als-issue.html"><b>experience
swallowing issues</b>,</a> I experimented with using a thickener for my
beverage.</p>
<p class="MsoNoSpacing">I’m able to maintain my social support, expand my coping
skills, and think creatively to solve my health challenges. I believe you can
do this too.<o:p></o:p></p>
<h3 style="text-align: left;"><b>My suggestions for you</b></h3><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; mso-list: l1 level1 lfo2; tab-stops: list .5in; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->Discuss your needs with your caregiver and
family. Identify what’s changed and <a href="https://alsandwellness.blogspot.com/2021/08/how-to-help-your-friends-when-they-ask.html"><b>ask
for their help</b></a> in finding a solution.<o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; mso-list: l1 level1 lfo2; tab-stops: list .5in; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->Initiate activities or events. Don’t wait for
the invitation; be the one to invite others along. Let friends know what you
don’t want to give up.<o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; mso-list: l1 level1 lfo2; tab-stops: list .5in; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->Have to give up driving a car? Be a <a href="https://alsandwellness.blogspot.com/2023/05/my-go-along-adventures-add-humor-to.html"><b><i>go-along</i></b></a><i>. </i>Accept
invitations to go along on short errands. The world is interesting; I’m always
surprised by what I see while waiting in the car while riding along with my
husband.<o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; mso-list: l1 level1 lfo2; tab-stops: list .5in; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->Put events on the calendar. Let everyone know
and be part of the plan when something important to you is ahead.<o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Don’t the ALS walls close in on you. Try my tips to help
your emotional well-being and learn to live well while living with ALS.</p><p class="MsoNoSpacing" style="text-align: center;"><b>------------------------------------</b></p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing"><o:p> </o:p>FOR MORE ON THIS TOPIC, I SUGGEST THESE POSTS:</p>
<p class="MsoNoSpacing"><a href="https://alsandwellness.blogspot.com/2022/01/learning-how-to-pivot-when-living-with.html"><b>Learning
How to Pivot When Living With ALS</b></a><b><o:p></o:p></b></p>
<p class="MsoNoSpacing"><a href="file:///C:/Users/Owner/Documents/Documents/2%20ALS%20Information/ALS%20Blog%20-%20mine/Blog%20rebuild/new%20posts%20to%20do/Banishing%20My%20ALS%20Thought%20Loops%20and%20Living%20One%20Day%20at%20a%20Time"><b>Banishing
My ALS Thought Loops and Living One Day at a Time</b></a></p><p class="MsoNoSpacing"><br /></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNzBpeaql88P6km1ZqtAaBcl_2hxM1ekteTAbPZ2JsPmlfzHT2X_k7ixu_0PcbnF7-dwzAaQyYOeY-92Nygi4Z8W_d9DYYvWMmqw_ZNZn5tmAJ0VMMJr7GGrk71nIC0UTqs4V6lERFgBORVIosbMyGE8-OluLi8dC8G6_gqqVTrQanRYlArIXn7azKhwer/s664/BB2.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNzBpeaql88P6km1ZqtAaBcl_2hxM1ekteTAbPZ2JsPmlfzHT2X_k7ixu_0PcbnF7-dwzAaQyYOeY-92Nygi4Z8W_d9DYYvWMmqw_ZNZn5tmAJ0VMMJr7GGrk71nIC0UTqs4V6lERFgBORVIosbMyGE8-OluLi8dC8G6_gqqVTrQanRYlArIXn7azKhwer/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS and Wellness Blog</td></tr></tbody></table><br /><p class="MsoNoSpacing" style="text-align: center;"><span style="font-family: georgia; font-size: large;"><i>If you don’t like something, change it; if you can’t
change it, change the way you think about it.</i></span><o:p></o:p></p><p class="MsoNoSpacing"><o:p> </o:p></p><p class="MsoNoSpacing"><o:p><br /></o:p></p><p class="MsoNoSpacing"><o:p><br /></o:p></p><p class="MsoNoSpacing"><o:p><br /></o:p></p><p class="MsoNoSpacing"><o:p><br /></o:p></p><p class="MsoNoSpacing">
</p><p class="MsoNoSpacing"><i>A version of this post first appeared as my
column on the </i><a href="https://alsnewstoday.com/columns/als-live-well-pushing-back-mental-walls/" target="_blank"><i>ALS News Today </i></a><i>website.<o:p></o:p></i></p><p></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1650717271407428985.post-24949737315342303442024-01-23T14:08:00.002-07:002024-01-29T15:14:36.438-07:00Living Loudly and Laughing with Dysarthria<p style="text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM4p1jbzk4N0ao0XEerjbDqgOz84ZszzCkZOFsRFcPonGeOQWRoJj2SrO1JgypBFZHodOxv3NjD8x0jdzqo7rNxVmJlw8qPNp79lE0ck7qmzeDLlKYXTdlgccMpLyjqNz7ncsO6PsyliosOQ1J1YdhEdhmn5EY6L1ERuyENfdqIP7IavwG7iLbPf21sY2z/s940/misc%20FB%20blog%20(3).png" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="788" data-original-width="940" height="335" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgM4p1jbzk4N0ao0XEerjbDqgOz84ZszzCkZOFsRFcPonGeOQWRoJj2SrO1JgypBFZHodOxv3NjD8x0jdzqo7rNxVmJlw8qPNp79lE0ck7qmzeDLlKYXTdlgccMpLyjqNz7ncsO6PsyliosOQ1J1YdhEdhmn5EY6L1ERuyENfdqIP7IavwG7iLbPf21sY2z/w400-h335/misc%20FB%20blog%20(3).png" width="400" /></a></p><p></p><p class="MsoNoSpacing" style="text-align: justify;">About 10 years ago, ALS impeded my speaking
ability. Like more than 80 percent of all ALS patients, I now have <a href="https://www.asha.org/public/speech/disorders/dysarthria/"><b>dysarthria</b></a>,
or what I refer to as my “ALS voice.” It’s a slurred, slow speech pattern with
a nasal tone and imprecise pronunciation of consonants. For example, I use a
“bar-rush” for my hair” and ask for “a <i>fawk </i>and a <i>sch-poon</i>” at dinner. To
further conserve my ability to speak, I utilize <a href="https://my.clevelandclinic.org/health/articles/9445-diaphragmatic-breathing"><b>diaphragmatic
breathing</b></a>, which while helpful, causes me to speak in a much lower
octave. Understandably, the onset of this latest health challenge has only
confirmed my intent to maintain a sense of humor while living with ALS.<o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">Like so many others who live with <a href="https://www.asha.org/public/speech/disorders/dysarthria/">dysarthria</a>,
I’ve learned to compensate by adding in extra body language and facial
expressions to help listeners understand what I’m trying to say. Sometimes I
feel as if I’m stuck in a foreign-language film with bad captioning; my mouth
moves and my arms wave, but the caption below simply reads, “Yes.”</p><p class="MsoNoSpacing" style="text-align: justify;">Thankfully, I’ve often found that I’m not always the only
one treating these dysarthria challenges humorously!</p><p class="MsoNoSpacing"><o:p></o:p></p><h3 style="text-align: justify;"><b>Phoney voices</b></h3><p class="MsoNoSpacing" style="text-align: justify;">Talking on the phone puts my “ALS-voice” on full display,
as I can’t rely on smiles and gestures to help me out. However, most folks who
know me and call our house aren’t shocked at all when they hear my gruff
“heh-roh.” They kindly carry on the conversation and in no way assume that an
angry pirate has suddenly taken up residence in our home.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">But I’ll admit to having a little fun with telephone
solicitors and political pollsters, because now whenever I answer the phone,
they hang up on ME!</p><p class="MsoNoSpacing"><o:p></o:p></p><h3 style="text-align: justify;"><b>A meeting of mimes</b></h3><p class="MsoNoSpacing" style="text-align: justify;">We all have a method of communication we default to when
stressed or confronted with someone who doesn’t understand us. Years ago, I
learned <a href="https://www.nad.org/resources/american-sign-language/">American
Sign Language</a> and now, whenever I hit a frustration point while
talking, I find myself in default and “signing” the words. The joke’s on me, as
no one around me understands sign language! I can only imagine everyone thinks
I’m having a case of muscle cramps while trying to make normal gestures.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">The tables turn, however, if I happen to meet up with a
person whom I haven’t seen in a long while. Obviously not familiar with ALS or
dysarthria, but they greet me by talking very loud and overly enunciating their
words. As I watched them, I wondered if they had a granny or Aunt Bessie who was
hard of hearing. Did seeing my <a href="https://alsandwellness.blogspot.com/2020/08/learning-to-roll-through-life-with-my.html"><b>rollator</b></a> trigger
their method of speaking?</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">This always puts me in a dilemma. Should I play along and
answer in the same loud way? Or risk their embarrassment by stating that my
hearing is fine? Thankfully, I don’t have to decide, as most folks quickly tire
from the physical effort and say their goodbyes.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">I attend a local club where a person insists on not only
speaking to me in a loud voice and very slowly but also adding pantomime. It’s
quite a show. I finally figured out that she loves to travel overseas and is
just using her unique default style. It’s the same speaking pantomime act that
works for her when stopping locals in a foreign country and asking for directions
to the nearest restaurant.</p><p class="MsoNoSpacing"><o:p></o:p></p><h3 style="text-align: justify;"><b>The whisper heard ‘round the world</b></h3><p class="MsoNoSpacing" style="text-align: justify;">At a recent meeting, while struggling to pay attention to
the speaker, I casually leaned over and whispered in my friend’s ear, “Are you
as bored as I am?” Only I forgot I don’t whisper anymore! My one-tone,
single-volume voice growled the question loud enough to startle those seated
two rows away. <o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">Immediately, I wished I had a virtual ‘delete’ or at least an
edit button to press!</p><p class="MsoNoSpacing"><o:p></o:p></p><h3 style="text-align: justify;"><b>Good intentions</b></h3><p class="MsoNoSpacing" style="text-align: justify;">My favorite story about speaking too loudly happened a
few years ago when I went to get my annual flu shot at our local grocery store.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">They have an in-house pharmacy with a little medical room
for added privacy. The day I showed up, about eight of us sat shoulder to
shoulder in the small windowless waiting room. The pharmacist administered the
shots in an even smaller room. A thin sliding door with mottled glass separated
the two areas, so we in the waiting room could clearly hear what was said
in the injection room.<o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">A sweet older woman had just been called in and I was
next. She must have been nervous because she asked the pharmacist how long he
had been giving shots. Through the glass door, we heard him answer.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">“Me? Oh, I’ve been giving shots for a long, long time. In
fact, I grew up on a farm in Illinois and learned how to give shots on the farm
animals.”</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">Without missing a beat, I turned to the man sitting next
to me and said (just a little too loud), “I’ll let you go next.”<o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">The whole room cracked up.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">Even though ALS and dysarthria can be challenging, I
believe that by facing each day with humor and a positive attitude, we can live
well while living with ALS.</p><p class="MsoNoSpacing" style="text-align: center;"><b>---------------------------------</b></p><p class="MsoNoSpacing">FOR MORE ON THIS TOPIC, I SUGGEST THIS POST: </p><p class="MsoNoSpacing"><a href="https://alsandwellness.blogspot.com/2018/03/als-dysarthria-use-these-innovative.html">ALS
Dysarthria? Use These Innovative Strategies to Keep On Talking!</a><o:p></o:p></p><p class="MsoNoSpacing">Or, check out the Humor category in my <a href="https://alsandwellness.blogspot.com/2017/09/als-and-wellness-blog-archives.html">Blog
Index</a></p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: left;"></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtFULuI7S7_tj5XNkqdkTMkHwaF7dtGumlhlDmVuDF2eBz0VXHEDMBabtfHeXcTGFDmauZLNH0LLIl0UjVsBJnYezwi0Xh7ppC22bXDDQw-dkY94iF8DFTOrdk41i5a5A4s5Alf01KVdCA3rDB0WZeCk5IuSJExsE7Eji3wrMa69pCDBUdSQqBUVx0C2rq/s664/BB2.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhtFULuI7S7_tj5XNkqdkTMkHwaF7dtGumlhlDmVuDF2eBz0VXHEDMBabtfHeXcTGFDmauZLNH0LLIl0UjVsBJnYezwi0Xh7ppC22bXDDQw-dkY94iF8DFTOrdk41i5a5A4s5Alf01KVdCA3rDB0WZeCk5IuSJExsE7Eji3wrMa69pCDBUdSQqBUVx0C2rq/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS and Wellness Blog</td></tr></tbody></table><br /><b><br /></b><p></p><p class="MsoNoSpacing" style="text-align: center;"><i><span style="font-family: georgia; font-size: large;">No matter what your heartache may be, laughing helps you
forget it for a few seconds.</span></i></p><p class="MsoNoSpacing" style="text-align: center;"><i><span style="font-family: georgia; font-size: medium;">~Red Skelton~</span></i><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: center;"><i><span style="font-family: georgia; font-size: medium;"><br /></span></i></p><p class="MsoNoSpacing" style="text-align: center;"><i><span style="font-family: georgia; font-size: medium;"><br /></span></i></p><p class="MsoNoSpacing" style="text-align: center;"><i><span style="font-family: georgia; font-size: medium;"><br /></span></i></p><p class="MsoNoSpacing"><i>A version of this post first appeared as my
column on the </i><a href="https://alsnewstoday.com/columns/als-gave-me-dysarthria-another-reason-laugh/" target="_blank"><i>ALS News Today </i></a><i>website.<o:p></o:p></i></p><p class="MsoNoSpacing"><o:p></o:p></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1650717271407428985.post-82322267974499997882024-01-15T14:26:00.002-07:002024-01-23T14:08:39.107-07:00ALS Is No Laughing Matter but a Little Humor Helps<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUiF9azK4_Pjtwfh0ZV51i03Of913obifJuTfNeYPieIMnnkQBkUwjcI6fl5bya_Qhk2AijSWRtqNV8Xu8wgRRlf509vb5alfxudxRbGzKaI4FKnRDEUdlQbI2vMa-_E3rZ7YNMuiYskgkKesUniAZbJmPqrizW2sBTsrypQy5wF3Kisu_8pYgmu6pOoVR/s940/misc%20FB%20blog%20(3).png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="788" data-original-width="940" height="335" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUiF9azK4_Pjtwfh0ZV51i03Of913obifJuTfNeYPieIMnnkQBkUwjcI6fl5bya_Qhk2AijSWRtqNV8Xu8wgRRlf509vb5alfxudxRbGzKaI4FKnRDEUdlQbI2vMa-_E3rZ7YNMuiYskgkKesUniAZbJmPqrizW2sBTsrypQy5wF3Kisu_8pYgmu6pOoVR/w400-h335/misc%20FB%20blog%20(3).png" width="400" /></a></div><p></p><p class="MsoNoSpacing" style="text-align: justify;">Having ALS is certainly no laughing matter, but
I’ve found that living with it can give rise to many humorous moments. Most of
my “laugh out loud” episodes are the result of misunderstood conversations,
encounters with Murphy’s Law, or while attempting to open “tamper-proof” pill
bottles.<o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">I’ll be the first to admit that holding onto a sense of
humor and “finding the funny” during grim times was <i>not</i> my initial response to
being diagnosed with ALS. Like many ALS patients, I sunk into a deep sadness
and cycled through feelings of loss. But amid the haze, I managed to recall my
past years as a wellness educator and the lessons we taught on the healing
power of humor. Slowly, I began applying humor to my new situation and have
been staying positive ever since. Here are a few suggestions that have worked
for me.</p><p class="MsoNoSpacing"><o:p></o:p></p><h3 style="text-align: justify;"><b>Why do we feel grumpy all the time?</b></h3><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">It turns out, that our brains are simply hardwired to see the
negative and contemplate all the ways something can go wrong. That trait saved
our ancestors from danger and helped them survive through the ages. But for
modern humans, constantly fixating on the negative only fills us with unhealthy
anxiety and worry.<o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">To help bring your brain and thoughts back into a healthy
balance, try this technique from <a href="https://www.rickhanson.net/">Rick
Hanson, Ph.D.,</a> author of “Hardwiring Happiness: The New Brain Science
of Contentment, Calm, and Confidence.” Whenever you’re feeling
negative, stop and notice something positive. It can be as simple as a picture
on the wall, a view out the window, or appreciating help from family and
friends. Once you identify something positive, spend the next 10 to 20 seconds
reflecting on it and the good feelings it brings you. This triggers your brain
to release the neurotransmitters dopamine and norepinephrine; which are the
“feel-good” chemicals our brain associates with reward. Practiced over time,
this technique will help your brain to seek more positive thoughts and develop
better emotional self-regulation.</p><p class="MsoNoSpacing"><o:p></o:p></p><h3 style="text-align: justify;"><b>The health benefits of laughing</b></h3><p class="MsoNoSpacing" style="text-align: justify;">If you really want to gain the full health benefits of a life filled with humor, just clicking on smiley-faced emojis and
texting “LOL” doesn’t count. You have to let your body physically experience
“laughing out loud.”</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">In the 1979 classic, “Anatomy of an Illness,” <a href="https://www.laughteronlineuniversity.com/norman-cousins-a-laughterpain-case-study/">Dr.
Norman Cousins</a> wrote of his diagnosis of a degenerative illness (<a href="https://ankylosingspondylitisnews.com/">ankylosing spondylitis</a>) and
his self-imposed regimen of watching a continuous stream of humorous films. Dr.
Cousins found that 10 minutes of belly-rippling laughter gave him two hours of
pain-free sleep.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;"><b>~~<a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1375238/">Research shows</a> that
laughter brings more oxygen into our lungs, stimulates our hearts, increases
our immunity, and is linked to pain relief. Plus, a good belly laugh usually
results in a “whoosh” of total body relaxation.~~</b></p><p class="MsoNoSpacing"><o:p></o:p></p><h3 style="text-align: justify;"><b>Tips and suggestions</b></h3><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">Like many other positive health behaviors we
follow, humor and the ability to laugh at <i>life’s lemons</i> is a
learnable habit.<o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">Begin by adding a few strategies at a time, such as:</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: left; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->Start your day with an open mind and actively
look for opportunities to “find the funny.”<o:p></o:p></p><p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: left; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->Create your own “go-to” list of funny videos,
movies, or TV shows that are sure to make you chuckle. (Currently, I’m enjoying
the comedy of Steve Martin and Martin Short in <i>Only Murders in the Building.
</i>And the “kid’s movie,” <i>The Secret Lives of Pets 2</i>)<i>.</i><o:p></o:p></p><p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: left; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->And, just try NOT TO LAUGH ALONG with Stan
Oliver & Laurel Hardy in this short video clip: <a href="https://youtu.be/9BAEJyuReWQ?si=H_VVIaF4EN3S309z">https://youtu.be/9BAEJyuReWQ?si=H_VVIaF4EN3S309z</a>
<i> </i><o:p></o:p></p><p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: left; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->Exchange jokes with family, friends, and
caregivers.<o:p></o:p></p><p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: left; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->Challenge yourself to laugh out loud at least
once a day.<o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">Adding a little humor into our lives is not only
beneficial, it is vital for our well-being.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">As I always say, <i>we can live well</i> while living
with ALS.</p><p class="MsoNoSpacing" style="text-align: center;"><b>-----------------------------------</b></p><p class="MsoNoSpacing">HERE ARE A FEW OF MY FAVORITE FUNNY POSTS:<o:p></o:p></p><p class="MsoNoSpacing"><a href="https://alsandwellness.blogspot.com/2015/04/behind-closed-doors.html">Behind
Closed Doors</a><o:p></o:p></p><p class="MsoNoSpacing"><a href="https://alsandwellness.blogspot.com/2015/02/abundant-laughing-situations.html">Abundant
Laughing Situations</a><o:p></o:p></p><p class="MsoNoSpacing">
</p><p class="MsoNoSpacing">Or, check out the 'Humor' category in my <a href="https://alsandwellness.blogspot.com/2017/09/als-and-wellness-blog-archives.html">Blog
Index</a><o:p></o:p></p><p class="MsoNoSpacing"><br /></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi44MtFSya7RrFdw_C9rbJNWuNoe1gT7oSRLK_VdHwpU34osY7WHJWp2jc7is1dT_l221ZTTU3MR2cY_ZtL8BgnRDni_ADA00WaOQQfqv8gdNnuHYfjWX2bLlq0xBK-Q57kHJqHOhjm2aeH-_d9uBYqFLZd-rn6GZyyLWYkVfnr-9RZ8YHhvhQnogEzX_ky/s664/BB2.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi44MtFSya7RrFdw_C9rbJNWuNoe1gT7oSRLK_VdHwpU34osY7WHJWp2jc7is1dT_l221ZTTU3MR2cY_ZtL8BgnRDni_ADA00WaOQQfqv8gdNnuHYfjWX2bLlq0xBK-Q57kHJqHOhjm2aeH-_d9uBYqFLZd-rn6GZyyLWYkVfnr-9RZ8YHhvhQnogEzX_ky/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS and Wellness Blog</td></tr></tbody></table><br /><p class="MsoNoSpacing" style="text-align: center;"><span style="font-family: trebuchet; font-size: large;"><i> </i></span></p><p class="MsoNoSpacing" style="text-align: center;"><span style="font-family: trebuchet; font-size: large;"><i>The most important decision you will ever make is to be
in a good mood. </i></span></p><p class="MsoNoSpacing" style="text-align: center;"><span style="font-family: trebuchet; font-size: large;"><i>Voltaire</i></span><o:p></o:p></p><p class="MsoNoSpacing"><o:p> </o:p></p><p class="MsoNoSpacing"><o:p> </o:p></p><p class="MsoNoSpacing"><o:p><br /></o:p></p><p class="MsoNoSpacing"><i>A version of this post first appeared as my
column on the </i><a href="https://alsnewstoday.com/columns/als-laughing-matter-humor/" target="_blank"><i>ALS News Today </i></a><i>website.<o:p></o:p></i></p><p class="MsoNoSpacing">
</p><p class="MsoNoSpacing"><o:p> </o:p></p><p class="MsoNoSpacing"><br /></p><p class="MsoNoSpacing"><o:p></o:p></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1650717271407428985.post-19330493238101282542024-01-08T14:28:00.005-07:002024-01-15T14:28:22.196-07:00Riding Out the Lag Time While Living with ALS<p></p><div style="text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS8Ex4jqC0vAE6jGucRnQ_pBoqHhXvY4JAY_hJjsJxwf3Xn0-g18TTHy7Vena41ZILguXYN7EgaO6TEDdCz99QXZ57-Rn8P8MrjCCcsAXFTy_xxGjqBegskROeqXPeK-IUp3A1YXljCWQ4NPqBnlJdYHR-9ZfZmL5bNoJJ95MYbOv00MT5BylnQIkGx35q/s940/misc%20FB%20blog%20(1).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="788" data-original-width="940" height="335" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjS8Ex4jqC0vAE6jGucRnQ_pBoqHhXvY4JAY_hJjsJxwf3Xn0-g18TTHy7Vena41ZILguXYN7EgaO6TEDdCz99QXZ57-Rn8P8MrjCCcsAXFTy_xxGjqBegskROeqXPeK-IUp3A1YXljCWQ4NPqBnlJdYHR-9ZfZmL5bNoJJ95MYbOv00MT5BylnQIkGx35q/w400-h335/misc%20FB%20blog%20(1).jpg" width="400" /></a></div><div style="text-align: center;"><br /></div><div style="text-align: left;"><p class="MsoNoSpacing" style="text-align: justify;">Yup, it’s that time of year again — lag time!<o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">We’re in that weird space in time that’s just after all
the holiday hoopla and right before the “next big thing” comes along. It’s a time to
catch up, reflect, and take a well-earned breather. And for those of us in the
Northern Hemisphere, it’s a time of waiting for the welcome signs of spring!</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">But for many of us living with ALS, the lag time can
last all year long.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">ALS puts us in a kind of permanent pause mode from
our formerly active lives. The pause can be overwhelming and often leaves us
feeling empty and alone. It’s as if we’re stuck in our own mental <a href="https://alsandwellness.blogspot.com/2022/04/are-you-stuck-in-als-waiting-room.html"><b>ALS
waiting room</b></a>.<o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Maybe you have January lag time all under control and can
successfully dodge and weave your way to springtime. But just in case you need
a little help, let me share my tips. Together, let’s <b><a href="https://alsandwellness.blogspot.com/2021/10/how-to-spend-more-time-not-thinking.html">spend
less time thinking about ALS</a> </b>and take on the new year with an action
plan!</p><p class="MsoNoSpacing"><o:p></o:p></p>
<h3 style="text-align: justify;"><b>Focus inward</b></h3><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: left; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->Practice being present. Practicing mindfulness
is easier when fewer distractions are pulling at our attention. As I
recently wrote in “<a href="https://alsandwellness.blogspot.com/2022/12/the-power-of-one-resolution.html"><b>The
Power of One Resolution</b></a>,” active mindfulness has both psychological and
physical benefits for ALS patients.<o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: left; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->Try a few of the “<a href="https://alsandwellness.blogspot.com/2021/10/these-5-things-keep-me-motivated.html"><b>5
Things That Keep Me Motivated</b></a>,” which include keeping a positive mindset,
taking frequent breaks to move your body, and surrounding yourself with bright
colors.<o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: left; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->Or check out this post on <a href="https://alsandwellness.blogspot.com/2022/01/how-self-care-minis-help-me-through.html"><b>Self-Care
Minis</b></a>. They’re super easy and will help your body, mind, and soul.<o:p></o:p></p>
<h3 style="text-align: left;"><b>Focus outward</b></h3><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: left; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->Research ways you can become more involved with
groups in your area. Follow your interests or look for opportunities in your
community, hobby, church, or special interest clubs.<o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: left; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->Contact your local <a href="https://www.alsa.org/">ALS Association</a> care coordinator and ask
what projects they have planned. They will certainly welcome your perspective,
suggestions, and participation.<o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: left; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->Consider joining or starting an ALS Facebook
group. Meeting other patients and caregivers online will broaden your circle of
friends and help to keep you informed about advances in ALS treatments.<o:p></o:p></p>
<h3 style="text-align: left;"><b> Focus forward</b></h3><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: left; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->Use this time to set new goals for yourself.
Discuss with your caregiver, family, or friends their suggestions as to how you
can reach your goals together.<o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: left; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]-->Start a bucket list, or revise an old one. Again,
enlist the help of your caregiver and family to brainstorm fun ideas.<o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: left; text-indent: -0.25in;"><!--[if !supportLists]--><span class="MsoHyperlink"><span style="color: windowtext; font-family: Symbol; font-size: 10pt;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span></span><!--[endif]-->Maybe you just need to<b> <a href="https://alsandwellness.blogspot.com/2023/01/how-to-revive-your-daily-life-routines.html">revive
your daily routine</a>.</b><span class="MsoHyperlink"><span style="color: windowtext;"><o:p></o:p></span></span></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: left; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span>Returning to normal eating, sleeping, and
exercise habits will help bring balance to your overall well-being. </p>
<p class="MsoNoSpacing" style="text-align: justify;">Finally, make happiness a daily priority. Begin each day
with a positive thought and end the day with gratitude.<o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">We can ride out this lag time together, and together, we
can live well while living with ALS.</p><p class="MsoNoSpacing" style="text-align: center;"><b>--------------------------------------</b></p><p class="MsoNoSpacing">FOR MORE ON THIS TOPIC, I SUGGEST THESE POSTS<o:p></o:p></p><p class="MsoNoSpacing"><b><a href="https://alsandwellness.blogspot.com/2015/10/how-to-outsmart-winter-blues-als-stress.html">How
to Outsmart the Winter Blues While Living with ALS</a></b></p><p class="MsoNoSpacing"><b><a href="https://alsandwellness.blogspot.com/2023/10/prepare-and-prevent-my-personal.html">Prepare
and Prevent: My Personal Strategy for Living With ALS</a><o:p></o:p></b></p><p class="MsoNoSpacing">
</p><p class="MsoNoSpacing"><o:p><br /></o:p></p><p class="MsoNoSpacing"><o:p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS4YHNppLle8chf_lNLLQr1wm-zui4t6bhgfXcYvL6EIENmUaos5pYfgUJsLTGYemzvpXSHyOcvZo4nWjJpX-XrCWVce8i8V84-tZOvSP6KjjMeJ9lq81DPrTC-vhrVASYewIvpkyV76XT3dnY1CexHU8PjLplyVJUNhfHcKazJZ1Ewyqx5GvQ1FviIexs/s664/BB2.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgS4YHNppLle8chf_lNLLQr1wm-zui4t6bhgfXcYvL6EIENmUaos5pYfgUJsLTGYemzvpXSHyOcvZo4nWjJpX-XrCWVce8i8V84-tZOvSP6KjjMeJ9lq81DPrTC-vhrVASYewIvpkyV76XT3dnY1CexHU8PjLplyVJUNhfHcKazJZ1Ewyqx5GvQ1FviIexs/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS Wellness Blog</td></tr></tbody></table><br /> </o:p></p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: center;"><o:p> <span style="font-family: times; font-size: large;"><i>W</i></span></o:p><span style="font-family: times; font-size: large;"><i>hen you’re trying to motivate yourself, appreciate the
fact that you’re even thinking about making a change. And as you move forward,
allow yourself to be good enough. </i></span>— Alice Domar</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing"><o:p> </o:p></p></div><br /><p></p><div><br /></div><div><i>A version of this post first appeared as my
column on the </i><a href="https://alsnewstoday.com/columns/post-holiday-tips-ride-out-lag-time/" target="_blank"><i>ALS News Today </i></a><i>website.</i></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1650717271407428985.post-58867249199043588392023-12-28T15:04:00.001-07:002024-01-08T14:31:28.767-07:00Positive Rituals and My Evolving Morning Routine<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY56rp6sLc7tDyGO9mYsyRckrdmklwFnA2TMO7sPCfTQ6XSFyzP_r5TU75FwPNXC6ILcERfSew_YZVRzHyQvFn_lwA5AH-4xQQdhUpZzQEFBUdnDbWbsSr3RYW4BGBm_ZoJiuepuiPZ32x5sYIMzjiPeok9Ov9F56rxaDPONV6wt7iLmm9tJN9xygr4va8/s940/misc%20FB%20blog%20(1).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="788" data-original-width="940" height="335" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjY56rp6sLc7tDyGO9mYsyRckrdmklwFnA2TMO7sPCfTQ6XSFyzP_r5TU75FwPNXC6ILcERfSew_YZVRzHyQvFn_lwA5AH-4xQQdhUpZzQEFBUdnDbWbsSr3RYW4BGBm_ZoJiuepuiPZ32x5sYIMzjiPeok9Ov9F56rxaDPONV6wt7iLmm9tJN9xygr4va8/w400-h335/misc%20FB%20blog%20(1).jpg" width="400" /></a></div><br /><p style="text-align: left;"><span style="text-align: justify;">Fourteen years ago, if you had asked me how I was feeling
when I woke up in the morning, I would’ve ignored you and disappeared beneath
the blankets. That was during my first year with ALS, a time when I felt
the heavy weight of worry and having a life disrupted by a disease I didn’t
even understand.</span></p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Fast-forward to today, when my mornings have me feeling
good and starting the day with a positive attitude. My mornings are a daily
ritual of mindful thinking and movement.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;"><o:p> </o:p>What do I do and how does it help me? Let me tell you
more.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<h3 style="text-align: justify;"><b>How my morning routine came to be</b></h3>
<p class="MsoNoSpacing" style="text-align: justify;">Years ago, before my ALS appeared, I used to enjoy going
for a quick jog, a long walk, or a vigorous session of yoga. I could easily fit
these into my already busy days. And I’d look forward to those breaks as a way
to reduce stress and relax.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">But living with ALS was a brand-new challenge. Suddenly,
I was living in the <a href="https://alsandwellness.blogspot.com/2021/09/living-in-slow-lane-of-als.html"><b>slow
lane<i> </i>of life</b></a>; my body was stiff, and it took so much time to do
simple things. I’d end the day feeling dejected that I couldn’t even find time
to stop and give my body the stretching it needed.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">That’s when it struck me: I had plenty of time in the
morning that I was frittering away by lying in bed feeling sorry for myself.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">The next morning, after my husband got up, I lingered in
bed a few minutes longer. Then, I pulled my knees to my chest and slowly rocked from side to side. That felt so good that I did several more spontaneous stretching
movements. Happily, I felt refreshed all morning long.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">When I first began this morning ritual, it took only five
minutes. But as I’ve grown more adept and increased repetitions, it’s expanded
to a full 20 minutes. Some days I add my <a href="https://alsandwellness.blogspot.com/2021/10/these-5-things-keep-me-motivated.html">mantra</a>,
while other days I think about the day ahead and the projects I’ll be focusing
on.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">And if my day becomes so jumbled that I miss one of my
afternoon <a href="https://alsandwellness.blogspot.com/2022/03/my-tricks-for-adding-movement-to-my-day.html"><b>mini-exercise
sessions</b></a>, I remind myself that at least I did my morning moving routine.<o:p></o:p></p>
<h3 style="text-align: justify;">The benefits of rituals</h3><p class="MsoNoSpacing" style="text-align: left;"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Research supports the use of rituals. Our rituals enhance
confidence in our ability to accomplish goals and <b><a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5452956/">buffer us against
uncertainty and anxiety</a>.</b><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Morning rituals are an opportunity for self-care, and
with ALS,<b> </b><a href="https://alsandwellness.blogspot.com/2021/12/with-als-self-care-isnt-selfish-its.html"><b>self-care
is vita</b>l</a> for our well-being.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">If you want to create your own morning routine, there are
lots of things you can include. Mine isn’t one-size-fits-all, but it might be a
good place to begin.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Besides gentle movement, try singing, journaling, or
meditation. It doesn’t even have to be the same thing every day; like mine, it
can evolve and change. The key is to be consistent and intentional and follow
your intuition.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Having a morning routine wakes me up and gets me going. I
feel good knowing that no matter what the day brings, I’ve given my body the
gift of healthy movement and a confident mindset. It’s a positive ritual that
helps bring balance, meaning, and value to my life, and I hope it will do the
same for yours as well. </p><p class="MsoNoSpacing" style="text-align: justify;">Let’s learn to live well while living with ALS.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: center;"><o:p> <b>----------------------------------</b></o:p></p>
<p class="MsoNoSpacing">FOR MORE ON THIS TOPIC, I SUGGEST THESE POSTS<o:p></o:p></p>
<p class="MsoNoSpacing"><a href="https://alsandwellness.blogspot.com/2022/05/how-i-use-showing-up-to-help-me-live.html" target="_blank">How I Use 'Showing Up' to Help Me Live with ALS</a></p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing"><a href="https://alsandwellness.blogspot.com/2022/02/changes-to-my-ampm-routines-that-made.html" target="_blank">Changes to My A.M./P.M. Routines that Made My Life with ALS a
Little Safer</a><o:p></o:p></p>
<p class="MsoNoSpacing"><o:p> </o:p></p>
<p class="MsoNoSpacing"><i><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1zZpI9FUap-GUtOcJV0i3P5JkYXnoWhhQYgEYHJHkGRUMk7xbZEdJhHRT5RHUomQwGjapjRoUYy89Aq9sH1Ho5hK77XsfQ_Ukp08_fZrfdY2A_gNO3jVvD0zo00z6VzyR0DLiLcIzyXg1eJbIqm5MZXK5lL9o8sOjfCyx4QxC_kv1t1xK0kIBy4n8SIbC/s664/BB2.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1zZpI9FUap-GUtOcJV0i3P5JkYXnoWhhQYgEYHJHkGRUMk7xbZEdJhHRT5RHUomQwGjapjRoUYy89Aq9sH1Ho5hK77XsfQ_Ukp08_fZrfdY2A_gNO3jVvD0zo00z6VzyR0DLiLcIzyXg1eJbIqm5MZXK5lL9o8sOjfCyx4QxC_kv1t1xK0kIBy4n8SIbC/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS and Wellness Blog</td></tr></tbody></table><br /> </i></p>
<p class="MsoNoSpacing"><br /></p>
<p class="MsoNoSpacing" style="text-align: center;"><span style="font-family: trebuchet; font-size: x-large;"><i>A year from now, you may wish you had started today.</i></span></p><p class="MsoNoSpacing" style="text-align: center;"><span style="font-size: medium;"><span style="font-family: trebuchet;">Karen Lamb</span><o:p></o:p></span></p>
<p class="MsoNoSpacing"><o:p><span style="font-size: medium;"> </span></o:p></p>
<p class="MsoNoSpacing"><o:p> </o:p></p><p class="MsoNoSpacing"><o:p><br /></o:p></p>
<p class="MsoNoSpacing"><i>A version of this post first appeared as my column on
the </i><a href="https://alsnewstoday.com/" target="_blank"><i>ALS News
Today </i></a><i>website.<o:p></o:p></i></p>
<p class="MsoNoSpacing"><o:p> </o:p></p>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1650717271407428985.post-76247911453375574162023-12-11T15:09:00.001-07:002023-12-28T15:04:52.439-07:00My ALS maxim: ‘In a Short Time, This Will Be a Long Time Ago’<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpk0mlMIxTpZ_FGV3pMBEJtD8pin9ZQewduHEx2F31WKhBlKJNkGgIw1HdXiTyRmS1Yt7_3Mg2uRo1hfbDuxAdi0xckNe7ccl-amlf8k1123dMfoBVgHtZnuaZM_Ce0u3pNkI2_Zzg6xwr4_YMYZRX4GyIk8YcNB9JUxoR36mvG-M834sNIjz6k0kTnBHp/s940/misc%20FB%20blog%20(3).png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="788" data-original-width="940" height="335" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpk0mlMIxTpZ_FGV3pMBEJtD8pin9ZQewduHEx2F31WKhBlKJNkGgIw1HdXiTyRmS1Yt7_3Mg2uRo1hfbDuxAdi0xckNe7ccl-amlf8k1123dMfoBVgHtZnuaZM_Ce0u3pNkI2_Zzg6xwr4_YMYZRX4GyIk8YcNB9JUxoR36mvG-M834sNIjz6k0kTnBHp/w400-h335/misc%20FB%20blog%20(3).png" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><p></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">For
those of us </span><span face=""Arial",sans-serif" style="font-size: 11.5pt;">living
with ALS<span style="color: #212121;">, every day can have a stressful event. </span></span></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="font-size: 11.5pt;"><span style="color: #212121;">The
key, I believe, is to move through the event and, if possible, remember it with
humor. I recently came across a quote from the movie “</span></span><a href="https://www.youtube.com/watch?v=c19MK05TZUc"><span face=""Arial",sans-serif" style="font-size: 11.5pt;">Slow West</span></a><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">” that reminds me that no
matter how stressful a particular event may seem at the time, I should let it
go:<o:p></o:p></span></p><div class="separator" style="clear: both;">
<p style="text-align: justify;"><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">“In
a short time, this will be a long time ago</span></i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">.”<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Here's an example. </span></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Recently my husband and I experienced a uniquely stressful event while
on our way to get our annual flu shots. Rather than going to the doctor’s
office, we get ours at the local drugstore. It’s convenient and quick, and we’re
in and out in no time.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">When
we pulled into the parking lot, we could see that nearly all the accessible
parking spots near the store’s entrance were full. All but one. That one,
unfortunately, had the extra loading space on the wrong side for our van’s
automatic ramp to unfold.<o:p></o:p></span></p>
<h3 style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">But no problem for us! </span></h3>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">My
husband takes pride in his driving skills, and while I added <i>helpful </i>comments,
he deftly maneuvered the van around and backed the van into the open stall.
Once parked, our special disembarking routine began.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">I
simply push a button on the dashboard in front of me, the van door slides open,
and the ramp unfolds to the ground. By this time, my husband had exited and
come around to the ramp side of the van. He then walks up and inside and
backs my electric scooter out. That’s my signal to press the button again. The
ramp retracts, the door slides shut, and my scooter is moved forward and parked
at my open door. Finally, I disembark feeling much like </span><a href="https://www.historyofroyalwomen.com/dagmar-of-denmark-2/empress-maria-feodorovna-part-one-life-princess/"><span face=""Arial",sans-serif" style="font-size: 11.5pt;">Princess Dagmar</span></a><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"> alighting
from my carriage to mount my trusty steed and ride off into the sunset!<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Only
today, when I pushed the button to retract the ramp nothing happened.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Naturally,
I pressed it again.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">In
spite of multiple pushes, the ramp remained motionless.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">“Did
you push the button?” My husband asked.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">“Yes,”
I replied, rolling my eyes.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">“Well,
push it again!” He urged.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">I
did. The ramp still didn’t respond.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">In
a clear demonstration of what I call “husband logic,” he reached in and pushed
the button himself. Nothing happened.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Perched
on the edge of the seat and leaning out my open door, I watched my husband
valiantly fiddling with the ramp’s cable and hinges while muttering. My
thoughts raced forward.<o:p></o:p></span></p><h3 style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">What might have been</span></h3>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">I
thought about my having to spend the whole long, afternoon waiting inside the drugstore
counting sunglasses and vitamin bottles. I imagined a van repairman finally
showing up, only to announce that he had to send off for a missing part.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">I
felt the heat of the afternoon Arizona sun beating down — all 95 degrees of it!
The odor of hot asphalt beneath me wafted up. An elderly man parked next to us
paused loading bags into his car to watch, sensing a possible entertaining
moment happening in front of him.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">On
a hunch, I opened the glove box and began digging through its collection of
booklets.<o:p></o:p></span></p>
<p style="text-align: justify;"><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">“Wait,
there might be instructions!” </span></i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">I called out.<o:p></o:p></span></p>
<p style="text-align: justify;"><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">“</span></i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">This
didn’t come with instructions!” Hubby answered. More husband logic!<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">My
digging miraculously produced a booklet labeled, “Van Conversion Owner’s
Manual.” Shuffling through the pages, I found a section titled “Ramp.”
Extending the manual out the door toward my husband, I held the page open to a
diagram with stick figures, labeled, “When the power goes out.”<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">“Ha!”
I exclaimed.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Now
my husband rolled his eyes at me. Nevertheless, he followed the instructions,
and to the obvious delight of a few passersby, he grabbed the far end of the
ramp and lifted it up high over his head. From my vantage point, it looked like
a castle drawbridge closing. It then magically folded in half, tucking itself
back into position on the inside of the van!<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">The
rest of my story has a happy ending. I rode my mighty scooter into the
drugstore. I emerged victorious with a bandage on my upper right arm. We even
bravely tested the button and the ramp’s response two more times before driving
off.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Who
knows why or what happened? Blame it on modern technology.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">On
the drive home we chuckled, reminding each other that, <i>in a short time,
this will be a long time ago</i>. <o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Remember, </span><span face=""Arial",sans-serif" style="font-size: 11.5pt;"><span style="color: #212121;">every day can have a stressful event. </span></span><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><span style="color: #212121;">The key, is to move through the event and, if possible, remember it with humor. N</span></span><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">o matter how stressful a particular event may seem at the time, I let it go. </span><span style="color: #212121; font-size: 11.5pt;">Humor
and patience... They are essential to learning how to live well while living with
ALS.</span></p><p><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><b>-----------------------------------</b></span></p><p><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEju9FnCulEWu2wLxoM9q36t1JNGbhml1ReH9i83MeJOBg0uUKtawSrUjUowZjwM71fUaKvvpTmOYm3ptl76bXlx7kRnTU0f32XCJF1CkhBTQ9vBl0z0NIbeEUMD_3qdpMRQtzbb9CBbLe0K2NiyTL1p_xlb42gFTgdqt_4UYrqv5QDXw5ayEuAwscEHafEN/s664/BB2.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEju9FnCulEWu2wLxoM9q36t1JNGbhml1ReH9i83MeJOBg0uUKtawSrUjUowZjwM71fUaKvvpTmOYm3ptl76bXlx7kRnTU0f32XCJF1CkhBTQ9vBl0z0NIbeEUMD_3qdpMRQtzbb9CBbLe0K2NiyTL1p_xlb42gFTgdqt_4UYrqv5QDXw5ayEuAwscEHafEN/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS and Wellness Blog</td></tr></tbody></table><br /><br /></span></p><p style="text-align: center;"><span face=""Arial",sans-serif" style="color: #212121; font-size: large;"><i>To
lose patience is to lose the battle<o:p></o:p></i></span></p><p>
</p><p style="text-align: center;"><span face=""Arial",sans-serif" style="color: #212121;"><span style="font-size: large;"><i>Mahatma
Gandhi</i></span><o:p style="font-size: 11.5pt;"></o:p></span></p></div><p><br /></p><p><br /></p><p><br /></p><p><br /></p><p><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">A
version of this post first appeared as my column on the </span></i><a href="https://alsnewstoday.com/" target="_blank"><i><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;">ALS News Today </span></i></a><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">website.<o:p></o:p></span></i></p><p><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">Photo by: </span></i><span style="color: #212121; font-family: Arial, sans-serif;"><span style="font-size: 15.3333px;"><i>a href on unsplash.com</i></span></span></p><p> </p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1650717271407428985.post-86463951270783743542023-11-08T15:44:00.004-07:002023-12-11T15:09:58.453-07:00Conquering the Gap Between ALS Diagnosis and Acceptance<p> </p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfXgxwANJ0_an3lFTcC8c8CMRnbTztMv7cxvMsq72XsB-L3j9AYNspZkFDQ_8SOwDr2JH2gyJDnIOKaQiPsQisyZlnCs5jFjIA-HKGZqR9F89REdYsQQstcsbTFy1FsNDt2_Z0JqXddvGosBZdGWUclfyjryj5aLlG17UoVybeE0ScDeRWIPWZy-3xYU0G/s940/misc%20FB%20blog%20(4).png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="788" data-original-width="940" height="536" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfXgxwANJ0_an3lFTcC8c8CMRnbTztMv7cxvMsq72XsB-L3j9AYNspZkFDQ_8SOwDr2JH2gyJDnIOKaQiPsQisyZlnCs5jFjIA-HKGZqR9F89REdYsQQstcsbTFy1FsNDt2_Z0JqXddvGosBZdGWUclfyjryj5aLlG17UoVybeE0ScDeRWIPWZy-3xYU0G/w640-h536/misc%20FB%20blog%20(4).png" width="640" /></a></div><p></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Shortly
after my doctor told me I had </span><span face=""Arial",sans-serif" style="font-size: 11.5pt;">ALS<span style="color: #212121;">; I faced the
daunting task of sharing the news with friends and family members. I hemmed,
hawed, and hesitated for many reasons, but my biggest challenge was confronting
the reality of my diagnosis. I knew that when I told others about my ALS -- it
would become </span></span><em><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-theme-font: major-fareast;">real</span></em><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"> — and I would have to
accept that I </span><em><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-theme-font: major-fareast;">had</span></em><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"> ALS.<o:p></o:p></span></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Friends
and family members deserved to know about my diagnosis, but first I had to
conquer my mental gap between diagnosis and acceptance.<o:p></o:p></span></p><h2 style="margin: 24pt 0in 0.25in; text-align: justify;"><strong><span style="color: #212121; font-family: Aleo; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: major-bidi;">Why me?</span></strong><span style="color: #212121; font-family: Aleo; font-size: 18pt; line-height: 107%; mso-bidi-font-family: "Times New Roman";"><o:p></o:p></span></h2><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">For
many nights, I lay awake retracing my life while trying to figure out what
caused my ALS.<o:p></o:p></span></p><p style="text-align: justify;"><em><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Did
I exercise too much or too little? Was it something in the air or the water?
Did I zig when I should have zagged?</span></em><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><o:p></o:p></span></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Deep
down, I knew that self-blame was unproductive and I eventually gave up my need
to know the <em>why.</em> Instead,
I settled on accepting that my ALS was caused by something on a deep, cellular
level. Since I couldn’t control my cells, I decided that finding out the cause
was best left to the medical experts.<o:p></o:p></span></p><h2 style="margin: 24pt 0in 0.25in; text-align: justify;"><strong><span style="color: #212121; font-family: Aleo; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: major-bidi;">Not supposed to be!</span></strong><span style="color: #212121; font-family: Aleo; font-size: 18pt; line-height: 107%; mso-bidi-font-family: "Times New Roman";"><o:p></o:p></span></h2><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Before
ALS, whenever I thought about the future, I assumed my life would continue in a
state of health and happiness, filled with interesting activities.<o:p></o:p></span></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Afterward,
I mourned the loss of my life goals, my expectations, and the familiar “me.”<o:p></o:p></span></p><p style="text-align: justify;"><em><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">This
isn’t the way my life was supposed to turn out.</span></em><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><o:p></o:p></span></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">As
I wrote in a previous column titled, <em><b>“</b></em></span><b><a href="https://alsandwellness.blogspot.com/2022/06/the-als-game-board-of-life.html"><span face=""Arial",sans-serif" style="color: #0a617c; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-theme-font: major-fareast;">The ALS
Game Board of Life</span></a></b><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">,<em>” </em>life
changes are often outside of our control. I had to move on while making the
best of my changed circumstances and my new perspective.<o:p></o:p></span></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Keeping
with the “game board of life” theme, I decided to put more pieces of “me” on
the board and expand on the qualities that defined me.<o:p></o:p></span></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Rather
than being overwhelmed with what I could no longer do, I considered what I
could accomplish. I thought about the groups and clubs that I belonged to, what
they needed help with, and — considering my limitations — how I could be of
value. <em>What are my skills
or knowledge that I haven’t yet tapped?</em><o:p></o:p></span></p><h2 style="margin: 24pt 0in 0.25in; text-align: justify;"><strong><span style="color: #212121; font-family: Aleo;">What was left?</span></strong></h2><p style="text-align: justify;"><span face="Arial, sans-serif" style="color: #212121; font-size: 11.5pt;">Although
I gave up trying to find the cause of my ALS and surrendered my belief that
life should be a particular way - - which were good steps in the right direction, although there still were more hurdles for me to
navigate along the path to the feeling of acceptance. Each step took time - - actually,
months and even years. I’ll list them for you at the end of this post.</span></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">But
don’t put off talking to and telling your friends and family. They will become
your most important support, both now and in the future.<o:p></o:p></span></p><h2 style="margin: 24pt 0in 0.25in; text-align: justify;"><strong><span style="color: #212121; font-family: Aleo; mso-bidi-font-family: "Times New Roman"; mso-bidi-theme-font: major-bidi;">When, how, and what to say</span></strong><span style="color: #212121; font-family: Aleo; font-size: 18pt; line-height: 107%; mso-bidi-font-family: "Times New Roman";"><o:p></o:p></span></h2><ul type="disc">
<li class="MsoNormal" style="color: #212121; line-height: normal; text-align: justify;"><span face=""Arial",sans-serif" style="font-size: 11.5pt;">I suggest you
begin by reading </span><span color="windowtext"><a href="https://alsandwellness.blogspot.com/2022/11/reframing-our-approach-with-new-kind-of.html"><span face=""Arial",sans-serif" style="font-size: 11.5pt;"><b>this post about
a new kind of ALS diagnosis</b></span></a></span><span face=""Arial",sans-serif" style="font-size: 11.5pt;"><b>.</b> This approach can help you when
explaining ALS to others.<o:p></o:p></span></li>
<li class="MsoNormal" style="color: #212121; line-height: normal; text-align: justify;"><span face=""Arial",sans-serif" style="font-size: 11.5pt;">Good advice is
readily available. I recommend the <b>“</b></span><span color="windowtext"><a href="https://www.alstexas.org/navigating-als/for-patients/just-diagnosed/sharing-diagnosis/"><span face=""Arial",sans-serif" style="color: #0a617c; font-size: 11.5pt;"><b>Sharing
Your Diagnosis</b></span></a></span><span face=""Arial",sans-serif" style="font-size: 11.5pt;">,<em>“</em> article from
the ALS Association’s Texas Chapter.<o:p></o:p></span></li>
<li class="MsoNormal" style="color: #212121; line-height: normal; text-align: justify;"><span face=""Arial",sans-serif" style="font-size: 11.5pt;">Friends can be our
closest allies, but when it comes to ALS, most are confused about what we
expect of them. For some suggestions, check out<b> </b></span><span color="windowtext"><a href="https://alsnewstoday.com/2017/09/12/als-patients-heres-how-to-help-your-friends-help-you/"><span face=""Arial",sans-serif" style="font-size: 11.5pt;"><b>this post about
helping friends to help you.</b></span></a></span><span face=""Arial",sans-serif" style="font-size: 11.5pt;"><o:p></o:p></span></li>
</ul><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">The
time I spent worrying is lost time that I will never get back. Going forward, I
remind myself that I am still the same person on the inside, and going forward,
I know I can live well while </span><span face=""Arial",sans-serif" style="font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-theme-font: major-fareast;">living with ALS</span><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">.<o:p></o:p></span></p><p style="text-align: center;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">--------------------------------------------</span></p><p><i style="background-color: white; color: #1a222a; font-family: Arial, Tahoma, Helvetica, FreeSans, sans-serif; font-size: 14.85px;">FOR MORE MOTIVATION ON THIS TOPIC, I SUGGEST THESE POSTS</i></p><p><b><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><a href="https://alsandwellness.blogspot.com/2023/10/prepare-and-prevent-my-personal.html" target="_blank">Prepare and Prevent: My Personal Strategy for Living With ALS</a><o:p></o:p></span></b></p><p><b><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><a href="https://alsandwellness.blogspot.com/2022/04/are-you-stuck-in-als-waiting-room.html" target="_blank">Are You Stuck in the ALS Waiting Room?</a></span></b></p><p><b><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><a href="https://alsandwellness.blogspot.com/2016/11/re-framing-how-to-live-balanced-life.html" target="_blank">Re-Framing: How to Live a Balanced Life While Living with ALS (Part 3 of 3)</a></span></b></p><p><br /></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyqtx4anK0-hS-nHWzfmensfKI1R1bQs7PXq6yqTI5YmhQNkzGwX2dPvs33B3fCpPDcktAK9Gi9bpTsD5M34fhkxGiWElPozZl3G3_meBxZsqsqIUOI1Z7vonEJMtmSpQih50M9o4XER7KGBkDGJlqorxH7tyEEWzZHQQa0eMPYuWXvkROrf_iNu7URgyd/s664/BB2.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgyqtx4anK0-hS-nHWzfmensfKI1R1bQs7PXq6yqTI5YmhQNkzGwX2dPvs33B3fCpPDcktAK9Gi9bpTsD5M34fhkxGiWElPozZl3G3_meBxZsqsqIUOI1Z7vonEJMtmSpQih50M9o4XER7KGBkDGJlqorxH7tyEEWzZHQQa0eMPYuWXvkROrf_iNu7URgyd/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<span> <br />ALS and Wellness Blog</span></td></tr></tbody></table><br /><p><br /></p><p style="text-align: center;"><span style="color: #212121;"><i><span style="font-family: trebuchet; font-size: large;">"You
don’t have to see the whole staircase, just take the first step"<o:p></o:p></span></i></span></p><p style="text-align: center;"><span style="color: #212121;"><i><span style="font-family: trebuchet; font-size: large;">Unknown</span></i><span face="Arial, sans-serif" style="font-size: 11.5pt;"><o:p></o:p></span></span></p><p>
</p><p><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><br /></span></i></p><p><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><br /></span></i></p><p><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><br /></span></i></p><p><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">A
version of this post first appeared as my column on the </span></i><a href="https://alsnewstoday.com/" target="_blank"><i><span face=""Arial",sans-serif" style="font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-theme-font: major-fareast;">ALS News Today </span></i></a><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">website.<o:p></o:p></span></i></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1650717271407428985.post-51577374697902108422023-10-28T14:15:00.002-07:002023-11-08T15:45:13.868-07:00How a Robot on Mars Improved My Attitude<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIQeEq6TdvDJLjt2Cl8LN7e98dryNMhuxrsvKiPNqqKI_t11eeTHGNWjbaeJo1Motr9H6hHiHKWQmkIupoekJZP1DGOq-wbkbRR8xtlJhU13tu0eknMM88fnjBYBy0tNP7GVK3fJ7KbymdMJTP1W4aymvBbw3RePo7F26eYyFzC4LFzweSu16NMh1bEcx-/s940/misc%20FB%20blog%20(3).png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="788" data-original-width="940" height="536" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIQeEq6TdvDJLjt2Cl8LN7e98dryNMhuxrsvKiPNqqKI_t11eeTHGNWjbaeJo1Motr9H6hHiHKWQmkIupoekJZP1DGOq-wbkbRR8xtlJhU13tu0eknMM88fnjBYBy0tNP7GVK3fJ7KbymdMJTP1W4aymvBbw3RePo7F26eYyFzC4LFzweSu16NMh1bEcx-/w640-h536/misc%20FB%20blog%20(3).png" width="640" /></a></div><span face="Arial, sans-serif" style="color: #212121; font-size: 11.5pt;"><br /></span><p></p><p style="text-align: justify;"><span face="Arial, sans-serif" style="color: #212121; font-size: 11.5pt;">I’ll
admit that because I live with </span><span face="Arial, sans-serif" style="font-size: 11.5pt;">ALS<span style="color: #212121;">, some of my
past “Human vs. Automation” experiences have been, um, less than perfect.
Touchpads that open automated doors don’t always work for me, and voice
activation software </span></span><a href="https://alsnewstoday.com/columns/2017/10/31/lessons-learned-from-echo-show/"><span face=""Arial",sans-serif" style="color: #0a617c; font-size: 11.5pt;"><b>doesn’t
recognize my commands</b></span></a><span face="Arial, sans-serif" style="color: #212121; font-size: 11.5pt;">. But now, I have a new sense of empathy for the robotic gizmos
infiltrating our world.</span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">What
changed my attitude? Watching “</span><a href="https://www.imdb.com/title/tt14179942/?ref_=nv_sr_srsg_0"><span face=""Arial",sans-serif" style="color: #0a617c; font-size: 11.5pt;">Good
Night Oppy</span></a><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">,” the documentary now streaming on Amazon Prime.<o:p></o:p></span></p>
<h3 style="margin-bottom: 12.0pt; margin-left: 0in; margin-right: 0in; margin-top: 12.0pt; margin: 12pt 0in; text-align: justify;"><span style="color: #212121; font-size: 11.5pt;">What is it about?</span></h3><h3 style="margin-bottom: 12.0pt; margin-left: 0in; margin-right: 0in; margin-top: 12.0pt; margin: 12pt 0in; text-align: justify;"><span style="color: #212121; font-size: 11.5pt; font-weight: normal;">The
documentary follows Opportunity, a Mars exploration rover affectionately dubbed
Oppy by its creators and scientists at NASA. Oppy was expected to live for only
90 days on the Red Planet but went on to continue operating for 15 years. That
feat alone won my respect.</span></h3>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Beyond
managing to outlive its predicted expiration date, I noted several more
similarities between the robot’s plight and the challenges of </span><span face=""Arial",sans-serif" style="font-size: 11.5pt;">living with ALS<span style="color: #212121;">.<o:p></o:p></span></span></p><h3 style="text-align: justify;"><span face=""Arial",sans-serif" style="font-size: 11.5pt;"><span style="color: #212121;">Slow and steady</span></span></h3>
<h3 style="margin: 12pt 0in; text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt; font-weight: normal;">As
Oppy navigated across the planet, its movements were slow, methodical, and
often jerky. Immediately, I could relate, knowing its movements were </span><a href="https://alsandwellness.blogspot.com/2021/09/living-in-slow-lane-of-als.html"><span face=""Arial",sans-serif" style="color: #0a617c; font-size: 11.5pt;">similar
to mine</span></a><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">.<span style="font-weight: normal;"> It operated in a version of what I call my</span> </span><a href="https://alsandwellness.blogspot.com/2022/02/how-i-shift-into-als-manual-mode.html"><span face=""Arial",sans-serif" style="color: #0a617c; font-size: 11.5pt;">manual
mode</span></a><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt; font-weight: normal;">.</span><span face=""Arial",sans-serif" style="background: white; color: #1a222a; font-size: 11pt; font-weight: normal; mso-fareast-font-family: Calibri; mso-fareast-theme-font: minor-latin;"> This is where I compare m</span><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt; font-weight: normal;">y ALS body to the 1969 Volkswagen Beetle that I used to own.</span></h3>
<p style="text-align: justify;"><span face="Arial, sans-serif" style="color: #212121; font-size: 11.5pt;">When
Oppy’s handlers on Earth sent up a command to, say, “Move forward and stop near
a boulder,” that simple command involved hundreds of mini commands — much like
the multitude of split-second mental calculations I have to make just to
successfully approach, turn, back up, and finally sit in a chair.</span></p><h3 style="text-align: justify;"><span face="Arial, sans-serif" style="color: #212121; font-size: 11.5pt;">We have support</span></h3>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Then
there was the fact that Oppy was alone and isolated. That’s exactly what many
ALS patients feel, from the moment they receive their </span><span face=""Arial",sans-serif" style="font-size: 11.5pt;">diagnosis<span style="color: #212121;"> on through the progression of their </span>symptoms<span style="color: #212121;">.<o:p></o:p></span></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">But
we patients forget that like Oppy, we have teams of supporters dedicated to
helping, figuring out problems, and offering options. While the rover has NASA
scientists in its corner, we have ALS clinic staff, </span><a href="https://www.als.org/local-support/certified-centers-clinics"><span face=""Arial",sans-serif" style="color: #0a617c; font-size: 11.5pt;">ALS
Association</span></a><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"> care coordinators, caregivers, friends, and family
cheering us on and supporting our well-being.</span></p><h3 style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">One at a time</span></h3><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">I
wrote <a href="https://alsandwellness.blogspot.com/2022/01/tap-into-your-inner-als-astronaut.html" target="_blank"><b>in this column</b></a> about feeling as if </span><a href="https://alsandwellness.blogspot.com/2022/01/tap-into-your-inner-als-astronaut.html"><span face=""Arial",sans-serif" style="color: #0a617c; font-size: 11.5pt;">we
patients are alone and stranded</span></a><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"> on a hostile planet,
describing the inspiration I gained from the movie “</span><a href="https://www.youtube.com/watch?v=ej3ioOneTy8"><span face=""Arial",sans-serif" style="color: #0a617c; font-size: 11.5pt;">The Martian</span></a><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">.”</span><span face="Arial, sans-serif" style="color: #212121; font-size: 11.5pt;"> </span></p><p></p><ul style="text-align: left;"><li style="text-align: justify;"><span face="Arial, sans-serif" style="color: #212121; font-size: 11.5pt;">Stay </span><a href="https://alsandwellness.blogspot.com/2017/04/how-to-focus-pay-attention-mindfulness.html" style="font-family: Arial, sans-serif; font-size: 11.5pt;" target="_blank">in the moment</a><span face="Arial, sans-serif" style="color: #212121; font-size: 11.5pt;">, don’t think too far ahead.</span></li><li style="text-align: justify;">Keep
your mind focused on solutions.</li><li style="text-align: justify;">Be
open to innovations and unique workarounds.</li><li style="text-align: justify;">Have
a plan and a purpose.</li><li style="text-align: justify;">Don’t
give up hope. </li></ul><p></p>
<p style="text-align: justify;"><span face="Arial, sans-serif" style="font-size: 11.5pt;">The
movie taught me that even when it seems the odds are against me and Murphy’s
law is creating setbacks, I can tap into my resourcefulness, resiliency, and
optimism. I just need to tackle my problems — one … at … a … time.</span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="font-size: 11.5pt;">So,
what do I have in common with a 5-foot, 2-inch robot named Opportunity that was
sent to the distant planet of Mars? Turns out quite a lot. And the emotions
that make me human, like having patience, perseverance, and a sense of purpose,
will help me continue to live well with ALS.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="font-size: 11.5pt;">I
encourage you to add this documentary to your viewing list. It’s an opportunity
that shouldn’t be missed.<o:p></o:p></span></p>
<p class="MsoNormal" style="text-align: center;">-------------------</p>
<p class="MsoNoSpacing"><i>FOR MORE MOTIVATION ON THIS TOPIC, I SUGGEST THESE POSTS</i><o:p></o:p></p>
<p><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><b><a href="https://alsandwellness.blogspot.com/2022/01/tap-into-your-inner-als-astronaut.html" target="_blank">Tap into your inner-astronaut</a></b><o:p></o:p></span></p>
<p><b><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><a href="https://alsandwellness.blogspot.com/2022/02/how-i-shift-into-als-manual-mode.html " target="_blank">How I Shift into ALS Manual Mode</a></span></b></p>
<p><b><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><a href="https://alsandwellness.blogspot.com/2021/09/living-in-slow-lane-of-als.html" target="_blank">Living in the Slow Lane of ALS</a></span></b></p>
<p><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"> </span></p>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNTCAeHBWWQbhdHN-qIDnXq_jfqBf36-YdFhZXedZVqqH70g1EaYcdwnNwbt2WYDxPld9jsRGo1pVVTfjOoMAoW_aVmQd9RYQBoZCfeS3T-5IGTzFUSK5WmbHFq6sPJVF_AOqex5fhEQJurtPpsudjplFESdzH6wntfpcMxgeIaPaGBaPxgOChlJgkZYhX/s664/BB2.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNTCAeHBWWQbhdHN-qIDnXq_jfqBf36-YdFhZXedZVqqH70g1EaYcdwnNwbt2WYDxPld9jsRGo1pVVTfjOoMAoW_aVmQd9RYQBoZCfeS3T-5IGTzFUSK5WmbHFq6sPJVF_AOqex5fhEQJurtPpsudjplFESdzH6wntfpcMxgeIaPaGBaPxgOChlJgkZYhX/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS and Wellness Blog</td></tr></tbody></table><br /><p><br /></p>
<p style="text-align: center;"><span style="color: #212121; font-family: trebuchet; font-size: large;"><i>Always get up and keep moving forward...it may be slow but it is still progress</i></span></p><p style="text-align: center;"><span style="color: #212121; font-family: trebuchet; font-size: medium;"><i>Diana Morrow </i></span></p><p><br /></p><p><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><br /></span></p><p><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><br /></span></p><p><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">A
version of this post first appeared as my column on the </span></i><a href="https://alsnewstoday.com/" target="_blank"><i><span face=""Arial",sans-serif" style="font-size: 11.5pt;">ALS News Today </span></i></a><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">website.</span></i></p>
<p><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"> </span></p>
<p class="MsoNormal"><o:p> </o:p></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1650717271407428985.post-43978927450196973682023-10-14T15:06:00.007-07:002023-10-28T14:16:08.860-07:00 Knitting My Way to a Solution for the Chills<p></p><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFszyYwDrXUJB5paK8DPEXmiFVQXIcSZny0wUfDkAs44DAKqmYpw1UOe0BYoHGcXRbrE6a1Gnl2lwZMwezmza2hSW1g5DNuxJ8rW8ag8EtUbWivVAT3zFtQldISm2vrlxUQLP8saiqCJbvEFBtMe5xufld7dv-lP0ByM0iopWa9OQaUZ_xt0RVqfZE3pCQ/s940/misc%20FB%20blog%20(6).png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="788" data-original-width="940" height="335" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgFszyYwDrXUJB5paK8DPEXmiFVQXIcSZny0wUfDkAs44DAKqmYpw1UOe0BYoHGcXRbrE6a1Gnl2lwZMwezmza2hSW1g5DNuxJ8rW8ag8EtUbWivVAT3zFtQldISm2vrlxUQLP8saiqCJbvEFBtMe5xufld7dv-lP0ByM0iopWa9OQaUZ_xt0RVqfZE3pCQ/w400-h335/misc%20FB%20blog%20(6).png" width="400" /></a></div><br /><div style="text-align: left;"><span style="color: #212121; font-size: 11.5pt; text-align: justify;">During
the past few years, I’ve had the pleasure of joining several online ALS support
groups as their guest speaker. My topic usually revolves around how we can reduce mental stress while living with ALS. For example, one
strategy I use is built around three simple questions: </span><i style="color: #212121; font-size: 11.5pt; text-align: justify;">How do I feel?
What do I need? Who or what can help me?</i></div></div></div><p></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">(I
wrote about this strategy in this post<b>: <a href="https://alsandwellness.blogspot.com/2015/08/how-what-who-als-stress-management.html">“ALS
Stress Management Made Easy.”</a><o:p></o:p></b></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Then,
I tell the following story about how this simple strategy helped me cope with one
of my ALS symptoms:<o:p></o:p></span></p>
<h3 style="text-align: justify;"><b><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">My
cold air challenges</span></b></h3>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Shortly
after I was diagnosed, my body developed a sensitivity to sudden temperature
changes, mainly cold drafts. I used to think that living in sunny southern
Arizona, I’d never feel cold, but surprisingly, I do now.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">For
example, when at the grocery store, I’d pass by the refrigerated dairy case and
suddenly feel I had been transported to the North Pole. Or at a restaurant, no
matter where I sat, I always ended up under the cold air vent!<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">My
jaw would tighten and the muscles in my shoulders, arms, and torso quickly
seized up. Trying to suppress top-to-toe shivers, I felt angry and frustrated.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Later,
at home, I knew my options were either 1.) to avoid these situations altogether
and never go out again, or 2.) to use the three questions to find a solution.<o:p></o:p></span></p>
<h3 style="text-align: justify;"><b><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Putting
the strategy into action</span></b></h3>
<p style="text-align: justify;"><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">How
do I feel?</span></i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">My
physical reactions told me <i>I felt cold.</i><o:p></o:p></span></p>
<p style="text-align: justify;"><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">What
do I need?</span></i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">I
needed to shield my neck and shoulders from cold drafts. I needed a portable,
easy-to-use neck warmer.<o:p></o:p></span></p>
<p style="text-align: justify;"><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Who
or what can help me?</span></i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">The
solution? A scarf. A simple scarf. </span></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">The next time I went out, I stashed a small
scarf in my purse, and at the first sign of a sudden, cool draft, quickly
wrapped it around my neck. <i>Ahh, </i>success!<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">But
I didn’t stop with just one scarf. Deciding I’d feel even better having a few
scarves of different colors to choose from, I expanded my inventory — by
knitting them myself.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">It
was easy to turn a single, colorful ball of yarn into a fun scarf, and 20+
scarves later, I was happy. Plus, I reasoned, it was therapeutic.<o:p></o:p></span></p><p style="text-align: justify;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVXNeh_m5K97cALwPZUL7m40LFft9RkQNtZR7uRHFGNvjtTGey3RrzmlGBcOxQsJ_3FT4jnxNppRGM0p4Vz4D5ogeHVo5Wmb7IKQ_EfXKGSrzZhu6TNXUzyih_LtienOH0nKOMaVNn_BQZ6qo1kmQmSANXOneo6n1K8xYPayTVjtCONArsxMuFdb3Sf81S/s2000/Photo%20Collage.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="2000" height="256" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgVXNeh_m5K97cALwPZUL7m40LFft9RkQNtZR7uRHFGNvjtTGey3RrzmlGBcOxQsJ_3FT4jnxNppRGM0p4Vz4D5ogeHVo5Wmb7IKQ_EfXKGSrzZhu6TNXUzyih_LtienOH0nKOMaVNn_BQZ6qo1kmQmSANXOneo6n1K8xYPayTVjtCONArsxMuFdb3Sf81S/s320/Photo%20Collage.png" width="320" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><span style="color: #212121; font-size: 11.5pt;">Knitting was not only was beneficial exercise for my hands, but I also used up leftover yarn
lingering in my craft area, and I felt mighty proud of each one I finished and
wore.</span><p></p><h3 style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Challenges vs solutions</span></h3>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">ALS
brings us many challenges and often feels like a crash course in adaptability.
But if (instead of withdrawing, lashing out, or any number of emotional and
non-helpful reactions), you take the time to identify the problem, list your
options, and create a plan, you <i>can</i> find good solutions. And even though some of our ALS challenges are bigger than what a simple scarf can solve...</span></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Just don’t
give up!<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Strangers
who see me wearing a bright scarf in the grocery store <i>might</i> think
I’m just a goofy lady making a fashion statement. But my friends know the real story:
I’m following my belief "to live well while living with ALS" - - and I believe that it's something you can do too. <o:p></o:p></span></p><p style="text-align: center;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><b>-----------------------------------------------</b></span></p>
<p>FOR MORE MOTIVATION ON THIS TOPIC, I SUGGEST THESE POSTS</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><a href="https://alsandwellness.blogspot.com/2022/01/tap-into-your-inner-als-astronaut.html" target="_blank">"Tap
into your inner astronaut"</a></span></p><p><span face="Arial, sans-serif" style="color: #212121; font-size: 11.5pt;"><a href="https://alsandwellness.blogspot.com/2021/08/how-to-help-your-friends-when-they-ask.html" target="_blank">"How
to help your friends when they ask how to help you</a>" </span></p>
<p class="MsoNoSpacing">And, check out <a href="https://alsandwellness.blogspot.com/2017/09/als-and-wellness-blog-archives.html" target="_blank">my index of over 100+ posts</a> <o:p></o:p></p><p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg52LCC0yntc45lXWSJ-yp7Sl8P6FQP1ggGp5oto4KHT-e02mZ_5fkF7PFTSAI3h0Fl6doobPg-IHFrgoLJJNO36QWX_YMAYoY1zTsHbdnynjGTpaxAicVpw-4QnAkO5aMoQREDU1uuEULLxfI26c3NGmywvz08jaYIbmRPLwC7byG5iLNYyODkag0-ml7w/s664/BB2.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg52LCC0yntc45lXWSJ-yp7Sl8P6FQP1ggGp5oto4KHT-e02mZ_5fkF7PFTSAI3h0Fl6doobPg-IHFrgoLJJNO36QWX_YMAYoY1zTsHbdnynjGTpaxAicVpw-4QnAkO5aMoQREDU1uuEULLxfI26c3NGmywvz08jaYIbmRPLwC7byG5iLNYyODkag0-ml7w/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS and Wellness Blog</td></tr></tbody></table><br /><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><br /></span><p></p><p style="text-align: center;"><span style="color: #212121;"><span style="font-family: trebuchet; font-size: large;"><i>Every
problem has a solution; it may sometimes just need another perspective.<o:p></o:p></i></span></span></p>
<p style="text-align: center;"><span style="color: #212121;"><span style="font-family: trebuchet; font-size: medium;"><i>Kathrine
Russell</i></span><span face="Arial, sans-serif" style="font-size: 11.5pt;"><o:p></o:p></span></span></p>
<p><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><br /></span></i></p><p><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><br /></span></i></p><p><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><br /></span></i></p><p><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">A
version of this post first appeared as my column on the </span></i><a href="https://alsnewstoday.com/" target="_blank"><i><span face=""Arial",sans-serif" style="font-size: 11.5pt;">ALS News Today </span></i></a><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">website.<o:p></o:p></span></i></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1650717271407428985.post-71157428571090256132023-10-08T17:30:00.002-07:002023-10-14T15:07:03.337-07:00Smooth Out a Rough Day with This Mental Game<p></p><div style="text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVYedlvc-nxTDVnJ2EYr3p09wFOuW3rDpmtVPOtIhMY54UM-5cxnkGHI_gCM2ujNahdlzoQVW3F9dGZXyUJFEKD4Mp52RxwrW1AN0dWbViwpMuBBOlaPsrkO_y8F1KAbyUuzEuFNvRmNKhfSQlC9AMG4UPIhova5kKqHkqU5re1CMtOt17Z4esBtH0Gmf3/s940/misc%20FB%20blog%20(3).png" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="788" data-original-width="940" height="335" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiVYedlvc-nxTDVnJ2EYr3p09wFOuW3rDpmtVPOtIhMY54UM-5cxnkGHI_gCM2ujNahdlzoQVW3F9dGZXyUJFEKD4Mp52RxwrW1AN0dWbViwpMuBBOlaPsrkO_y8F1KAbyUuzEuFNvRmNKhfSQlC9AMG4UPIhova5kKqHkqU5re1CMtOt17Z4esBtH0Gmf3/w400-h335/misc%20FB%20blog%20(3).png" width="400" /></a></div><p></p><p class="MsoNoSpacing" style="text-align: justify;">My husband and I recently took a short trip out of town.
On the morning we left, it dawned on me that I was going to have <i>one of
those days.</i> You know the kind. A day when one thing after another gets
in the way - - and it just doesn’t stop coming.<o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">The crowning moment happened during my third attempt to
put my foot into a sock — a maneuver I’ve managed a million times in my life.
But this morning, my foot and the sock just couldn’t match up. The sock kept
twisting and getting stuck and my hands were weakening with each failed
attempt. Grrrr!</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">I was angry and frustrated, and my body began to sweat. At
this point, it would have been easy to give up, curse my ALS, and dissolve
into a puddle of tears.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">But I didn’t.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">Instead, I stopped what I was doing and took a few deep
breaths. Then, I thought, “Aha! Today I’m in a<i> driver’s ed training
film!”</i></p><h3 style="text-align: justify;"><b>Driver’s ed? What training film?</b></h3><p class="MsoNoSpacing" style="text-align: justify;">When I was in high school, we had to pass a driver’s
education class to get a license.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">Before we got inside a real car, we spent weeks in a
classroom. We would sit in small dummy cars and watch short films that took us
through various driving situations. While the film played on a big screen, we
had to demonstrate correct reactions to a bicyclist veering across the road, a
fire engine whizzing by, or a long line of slow-moving vehicles.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">It always struck me as funny that these generic films
were shot in sunny, flat Florida. Never mind that we were viewing them in Iowa,
with its rolling hills and roads covered in ice and snow.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">But the lesson from those films stayed with me: the
unpredictability of life and how our reactions matter. So now, whenever I have <i>one of those days,</i> I use the memory to help me
adjust my attitude and find humor in the situation.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">If my description of a <a href="https://www.youtube.com/watch?v=BrY3Q8CNb9Y"><b>driver’s education class in
the 1960</b>s</a> is a little outdated for you, think of one of those
hidden-camera TV shows like “Candid Camera” or “TV’s Bloopers & Practical
Jokes” that feature practical jokes played on unsuspecting people.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">What’s most important to me is to not go through an
entire day feeling stressed out - - especially now that I live with ALS.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">Mental stress causes the brain to release cortisol, and
having too much over a long period of time wears down our immune system and
resilience. Negative thinking also adversely affects our emotional well-being,
which has been <b><a href="https://www.sciencedirect.com/science/article/pii/S240565021930022X#bb0090">linked
to ALS symptom progression</a>.</b></p><p class="MsoNoSpacing"><o:p></o:p></p><h3 style="text-align: justify;"><b>How did the rest of the trip go?</b></h3><p class="MsoNoSpacing" style="text-align: justify;">Unfortunately, the feeling of being a training film stayed
with me throughout the day. While at a gas station rest stop, I entered the
women’s restroom (wearing my AFOs and pushing a rollator) only to find the floor had been freshly mopped, forcing me to
navigate the slippery puddles. Then, when we passed a large metropolitan
city, our van’s GPS added an hour to our journey by ignoring a shorter loop
around the city, directing us instead through the heavy stop-and-go traffic.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">But we survived and laughed about it later. My memories of
the trip are that we saw beautiful landscapes, attended a wonderful event, and
spent time with cherished friends.</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">Although we each have a different journey with ALS, we
share the potential to succumb to negative thinking. The next time you find
yourself in the middle of <i>one of those days,</i> try my imaginary
game. It’s one more strategy you can add to your <b><a href="https://alsnewstoday.com/2018/06/05/als-stress-toolkit-how-to-build-your-own/">ALS
stress toolkit</a>.</b></p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing" style="text-align: justify;">I believe we <i>can</i> live well while living
with ALS.</p><p class="MsoNoSpacing" style="text-align: center;">-----------------------------------------</p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing"><i>FOR MORE ON THIS TOPIC, I SUGGEST THESE POSTS</i></p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing">How I Avoid the Sticky Points in My Day <a href="https://alsandwellness.blogspot.com/2021/11/how-i-avoid-sticky-points-in-my-day.html">https://alsandwellness.blogspot.com/2021/11/how-i-avoid-sticky-points-in-my-day.html</a></p><p class="MsoNoSpacing">The Small Stuff <a href="https://alsandwellness.blogspot.com/2015/04/the-small-stuff.html">https://alsandwellness.blogspot.com/2015/04/the-small-stuff.html</a></p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing">And, check out my index of over 100+ posts: <a href="https://alsandwellness.blogspot.com/2017/09/als-and-wellness-blog-archives.html">https://alsandwellness.blogspot.com/2017/09/als-and-wellness-blog-archives.html</a></p><p class="MsoNoSpacing"><br /></p><p class="MsoNoSpacing"><o:p></o:p></p><p class="MsoNoSpacing"><o:p> </o:p></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfPwGKKTYHQw7rc95Anwamxy4Cri59GCNy6vRGOXGV7Q3cAWt8aCKxZYLt-8pdP1ZNm52VShUJHupZpmWWrlGuAzFFIaTMfBx_vh07gAHFYfSMufcww1UCFlKMhbjMWwq1mTUkNubAkdKexq5IHDuNCO9EUETGzKYK-YRpYX-ep8OuoSWekjtw8VdbsKvg/s664/BB2.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhfPwGKKTYHQw7rc95Anwamxy4Cri59GCNy6vRGOXGV7Q3cAWt8aCKxZYLt-8pdP1ZNm52VShUJHupZpmWWrlGuAzFFIaTMfBx_vh07gAHFYfSMufcww1UCFlKMhbjMWwq1mTUkNubAkdKexq5IHDuNCO9EUETGzKYK-YRpYX-ep8OuoSWekjtw8VdbsKvg/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS and Wellness Blog</td></tr></tbody></table><br /><p></p><p class="MsoNoSpacing" style="text-align: center;"><i><b><span style="font-family: trebuchet; font-size: large;">Don’t sweat the small stuff...<o:p></o:p></span></b></i></p><p class="MsoNoSpacing" style="text-align: center;"><b><span style="font-family: trebuchet; font-size: large;"><i>and it’s all small stuff!</i><o:p></o:p></span></b></p><p class="MsoNoSpacing" style="text-align: center;"><i><b><span style="font-family: trebuchet; font-size: medium;">Richard Carlson</span></b></i><o:p></o:p></p><p class="MsoNoSpacing"><o:p> </o:p></p><p><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><br /></span></i></p><p><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><br /></span></i></p><p><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">A
version of this post first appeared as my column on the </span></i><a href="https://alsnewstoday.com/" target="_blank"><i><span face=""Arial",sans-serif" style="font-size: 11.5pt;">ALS News Today </span></i></a><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">website.<o:p></o:p></span></i></p><p>
</p><p><br /></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1650717271407428985.post-20465520743051689052023-10-02T17:42:00.001-07:002023-10-08T17:31:15.265-07:00Prepare and Prevent: My Personal Strategy for Living With ALS<p></p><div style="text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxXRMGxLhlLKXMOLthEfXJsN9jEBiAKVS6ccPoQ1hkj6bEWtJcRNirwRB7Iq15qfHG4QFGh773wFSGkos6PrgT8AFw2Ibi02-mdMjkXzCAejDcdmy6vHGTIwJ4iEjGo1PxbFTUQKdeYG1Po67BVDSgXI4kYxV-EgHl3IoRnRbbMZPqAkKZPskVWCMOO44m/s940/planning.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="788" data-original-width="940" height="335" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjxXRMGxLhlLKXMOLthEfXJsN9jEBiAKVS6ccPoQ1hkj6bEWtJcRNirwRB7Iq15qfHG4QFGh773wFSGkos6PrgT8AFw2Ibi02-mdMjkXzCAejDcdmy6vHGTIwJ4iEjGo1PxbFTUQKdeYG1Po67BVDSgXI4kYxV-EgHl3IoRnRbbMZPqAkKZPskVWCMOO44m/w400-h335/planning.jpg" width="400" /></a></div><br /><p></p>
<p class="MsoNoSpacing" style="text-align: justify;">During my first year living with ALS, I spent a lot
of time researching and learning whatever I could about the disease. I came
across long lists of medical equipment that patients like me could expect to
use when ALS symptoms progressed. <o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">...Books written by medical experts with in-depth
explanations of the effects symptoms had on the body. <o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">...And patient blogs sadly chronicling the progression of
their own ALS symptoms. <o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">At the time, nothing addressed my burning question: “What
can I do right now?”</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Through much trial and error, plus connecting with
like-minded ALS patients around the world, I developed a personal plan that
worked for me. It’s one that I believe can be of help to you, too, no matter if
you are newly diagnosed or have had ALS for the past few years.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">My plan follows a thought process similar to what goes
into preparing for a natural disaster. We hope they don’t happen, but if a
hurricane, flood, fire, and yes, even ALS symptoms are on the way, advance
preparations are advisable. Preparation is important, but so is holding on to
the mindset of prevention.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">ALS symptoms progress differently for each person, and we
may not be able to prevent the inevitable, but there’s a lot of research
pointing to ways to slow down symptom progression. So, I included these in my
plan as well.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<h3 style="text-align: justify;">The 1st step: Prepare</h3><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">I began by drawing a line down the middle of a sheet of
paper, and on the left, I listed all the areas of my home that I used. My list
included the bathroom, bedroom, dressing area, kitchen, entry doors, and even
transportation.<o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Then, for each area, I asked the question, “What if?” As
in, “What if I had trouble walking, balancing, or standing? What if I had to
use a walker or a power chair, or relied 100% on a caregiver in order to use
this space?”<o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">As I thought of possible answers or solutions, I jotted
them down on the right, next to the area in question. These were the
modifications or changes in that area that needed to be made (short-term and
long-term) to prepare for the eventuality of my ALS symptoms progressing.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">For example, my husband and I decided to install grab
bars in the bathroom. We also added an ADA-height bidet toilet and <a href="https://alsandwellness.blogspot.com/2020/10/how-i-made-my-shower-safer.html">remodeled
the shower area</a> to accommodate a roll-in shower chair. Next, I added a
chair to the area where I dressed, and I moved all the clothing I wore most
often to be within easy reach.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">In the living room, side tables and chairs were spaced to
allow easier access for a rollator to move through. Then, I moved my laptop
computer from a small space in our office area to the dining room table. This
gave me more space to have a rollator nearby, plus, I could sit on a sturdier
chair. And so on. We continued making small changes throughout our entire
house.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Over time, I’ve really appreciated the various
modifications we had made early on. They helped ease my anxiety as my symptoms
progressed and made the transition to using a rollator much easier.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<h3 style="text-align: justify;">The 2nd step: Prevent</h3><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">As I mentioned earlier, research exists on ways to slow
down ALS symptoms. These are so simple many patients overlook them entirely,
but I encourage you to include them in your daily routine. I followed four
strategies and wrote about them in more detail <a href="https://alsnewstoday.com/columns/formula-wellness-simple/">in a previous
column</a> on ALS News Today. </p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: justify; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]--><b>Medication: </b>Follow your doctor’s
advice and take all prescribed medications.<o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: justify; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;"> </span></span><b>Mindfulness: </b><a href="https://alsandwellness.blogspot.com/2017/04/how-to-focus-pay-attention-mindfulness.html" target="_blank">Practicing mindfulness has helped me</a> feel that I am in control, have more awareness, and am moving
safely.<o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: justify; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]--><b>Motion: </b><a href="https://alsandwellness.blogspot.com/2022/03/my-tricks-for-adding-movement-to-my-day.html" target="_blank">Moderate exercise</a> can <a href="https://physoc.onlinelibrary.wiley.com/doi/full/10.1113/jphysiol.2009.169748">improve
life span and ease ALS symptoms</a>.<o:p></o:p></p>
<p class="MsoNoSpacing" style="margin-left: 0.5in; text-align: justify; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10.0pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variant-position: normal; font-variation-settings: normal; line-height: normal;"> </span></span><b>Mood:</b> When I notice that I’m having
trouble coping with change, I ask myself what has changed, what I need to do,
or who can help me.<o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Now, 13 years later, I’m still researching the latest
information on ALS, but I’m doing it with the knowledge and confidence that I’m
prepared for future changes — and doing what I can to slow down those changes.
Take a test run with my plan, it just might be a perfect project for you whether
you’re newly diagnosed or, have been living with ALS for some time.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">My wish for all my readers is: Let’s keep learning to
live well while living with ALS.</p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: center;"><b>----------------------------------</b></p>
<p class="MsoNoSpacing">FOR MORE MOTIVATION ON THIS TOPIC, I SUGGEST THESE POSTS<o:p></o:p></p>
<p class="MsoNoSpacing">Mental Space (and closet Space) <a href="https://alsandwellness.blogspot.com/2015/03/mental-space.html">https://alsandwellness.blogspot.com/2015/03/mental-space.html</a></p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing">Banishing My ALS Thought Loops and Living One Day at a
Time <a href="https://alsandwellness.blogspot.com/2022/08/banishing-my-als-thought-loops-and.html">https://alsandwellness.blogspot.com/2022/08/banishing-my-als-thought-loops-and.html</a></p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing">And, check out my index of over 100+ posts: <a href="https://alsandwellness.blogspot.com/2017/09/als-and-wellness-blog-archives.html">https://alsandwellness.blogspot.com/2017/09/als-and-wellness-blog-archives.html</a></p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing"><o:p> </o:p></p>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkgBnuN3loBAHREIee56HrxZ1C3Jyv8TMvr-ErN8X35adeO0IPWzYdvXkPGFqtJa_y5zuWf_lvi1mrs7F3DKfL2sn8st4Q0L-uEtSf2gYS5_zlel9aAwkqrJZb5JSpOGpdSixKJaoN13Doz09XNJ_9ztu11VwdnicFlLWmgD6PRejzsy6nQ-12VH9HDR90/s664/BB2.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgkgBnuN3loBAHREIee56HrxZ1C3Jyv8TMvr-ErN8X35adeO0IPWzYdvXkPGFqtJa_y5zuWf_lvi1mrs7F3DKfL2sn8st4Q0L-uEtSf2gYS5_zlel9aAwkqrJZb5JSpOGpdSixKJaoN13Doz09XNJ_9ztu11VwdnicFlLWmgD6PRejzsy6nQ-12VH9HDR90/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS and Wellness Blog</td></tr></tbody></table><br /><p class="MsoNoSpacing" style="text-align: center;"><i><span style="color: #212121;"><span style="font-family: trebuchet; font-size: large;">Keep
calm and plan on</span></span></i></p>
<p style="text-align: center;"><i><span style="color: #212121;"><span style="font-size: medium;"><span style="font-family: trebuchet;">Anonymous</span><span style="font-family: Arial, sans-serif;"><o:p></o:p></span></span></span></i></p>
<p><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><br /></span></i></p><p><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><br /></span></i></p><p><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><br /></span></i></p><p><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><br /></span></i></p><p><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><br /></span></i></p><p><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">A
version of this post first appeared as my column on the </span></i><a href="https://alsnewstoday.com/" target="_blank"><i><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;">ALS News Today </span></i></a><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">website.</span></i></p>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-1650717271407428985.post-27948601614411460402023-09-23T14:23:00.003-07:002023-10-02T17:43:04.831-07:00I’m Learning to Embrace My High-speed ALS Reflexes<p></p><div style="text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqdh8vtTYBC2OtcdXJbjXqRKFd4qNDxE8BfRBu5FgXYgey9AbxrImu5Lc7AJ6c9yLkox23r49uw3EBfSBcvEO2RkFbRAEO6-3YqyCJGT8LBI_nmF2tOSuSbgz4M1AVOVD-iq4bey_7WaoTinzdLOjgtqsnsaDWgFhOdEpcjdJ40-3bcE2MAe4vGizMu4OQ/s940/ALS%20reflexes.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="788" data-original-width="940" height="335" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhqdh8vtTYBC2OtcdXJbjXqRKFd4qNDxE8BfRBu5FgXYgey9AbxrImu5Lc7AJ6c9yLkox23r49uw3EBfSBcvEO2RkFbRAEO6-3YqyCJGT8LBI_nmF2tOSuSbgz4M1AVOVD-iq4bey_7WaoTinzdLOjgtqsnsaDWgFhOdEpcjdJ40-3bcE2MAe4vGizMu4OQ/w400-h335/ALS%20reflexes.jpg" width="400" /></a></div><div style="text-align: center;"><br /></div><p></p><p class="MsoNoSpacing">Shortly after I was diagnosed with ALS, I began to
notice my reflexes acting kind of wonky. Pre-ALS, thanks to years of practicing
yoga and tai chi, I considered myself a relatively calm and relaxed person. But
now, any sudden loud noise or unexpected tap on my shoulder had me jumping out
of my chair. My doctor explained the cause was an ALS symptom known
as <a href="https://www.ninds.nih.gov/health-information/disorders/spasticity">muscle
spasticity</a>. “What does that mean?” I asked. And she gave me a short
demonstration.<o:p></o:p></p><div style="text-align: center;">
<p class="MsoNoSpacing" style="text-align: justify;">Using a small rubber hammer, she thumped along my
shoulders, elbows, and wrists. All along the way, in response to each tap, my
joints would bounce as if jerked by an invisible string. However, when she got
to my knees, she knowingly stood clear and well to the side, because with that
single tap, my leg performed a kick worthy of a field goal!</p><p class="MsoNoSpacing" style="text-align: justify;"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Later at home, my exaggerated reflexes began showing up
at other times as well.<o:p></o:p></p>
<h3 style="text-align: justify;">Supersized reactions</h3><p class="MsoNoSpacing" style="text-align: justify;"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">First, there are the monster sneezes. No dainty <i>ah-choo </i>here.
Mine has the velocity of a jet engine. My first major sneeze happened while I
was walking across the room pushing my rollator. The sneeze came on so quickly
and so powerfully that I suddenly found myself kneeling on the floor. Luckily,
my husband was nearby to help pull me back up.<o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Then I discovered that loud explosions in action movies
also activated my exaggerated reflexes. More than once I’ve had to suspend my
favorite pastime of knitting while watching TV because of all the stitches that
fell off my needles during my supersized body flinch.<o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Most people find that the cool air wafting from the
refrigerated food section in the grocery store feels refreshing. For me, it’s
as if I’ve been transported to the North Pole. When the cold air hits my face,
my jaw and neck muscles tighten, instigating a domino effect of tense muscles
down through the rest of my body. The same thing happens to me at restaurants.
It seems no matter where I sit, I always end up under the cold air vent.<o:p></o:p></p>
<h3 style="text-align: justify;">Why?</h3><p class="MsoNoSpacing" style="text-align: justify;"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">I’ve had it explained to me that spasticity is caused by
a rogue message being sent to the muscles telling them to contract. The message
is not from <i>me</i>, or my conscious commands, but a garbled
command from my <a href="https://my.clevelandclinic.org/health/body/23273-autonomic-nervous-system">autonomic
system</a>. It’s especially apparent when an ALS patient has clonus, the rapid,
repeating muscle contractions. It’s much like the bouncing knee of a seated but
very nervous adolescent. In this case, the reflexes are caught in a continuous
feedback loop that can only be relieved by a physical change in position.<o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Knowing my muscle spasticity is something I just have to
learn to live with helps me avoid wasting time feeling angry, frustrated, or
mad at my body.<o:p></o:p></p>
<h3 style="text-align: justify;">Instead, I follow the strategy of embracing my quirky
reflexes</h3><p class="MsoNoSpacing" style="text-align: justify;"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Knowing I’ll be out in cold weather or even wandering the
grocery aisles, I dress in layers and <a href="https://alsnewstoday.com/columns/knitting-cold-temperature-changes-solutions/">bring
a neck scarf</a>. Sometimes I don’t need them, but when I do, I’m thankful I
have them. Funnily enough, I’ve discovered that wearing a face mask helps keep
my face and cheeks protected from the cool air, too.<o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">As for those monster sneezes, at the first inkling of an
oncoming sneeze, all I can do is grab something solid and hold on. A table,
sink faucet, grab bar, anything, and keep holding until the mayhem has passed.
Those of you who share this particular reaction will know exactly what I mean.<o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Finally, I’ve learned to approach the unexpected
challenges in each day <a href="https://alsandwellness.blogspot.com/2015/02/abundant-laughing-situations.html">as
a game</a>. It’s one more strategy, along with the ones I mentioned above, that
you can add to your ALS stress toolkit.<o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;">Let’s help each other learn to live well while living
with ALS.<o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: justify;"><o:p> </o:p></p><p class="MsoNoSpacing" style="text-align: justify;"><span style="text-align: center;">FOR MORE MOTIVATION ON THIS TOPIC, I SUGGEST THESE POSTS</span></p><p class="MsoNoSpacing"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: left;"><a href="https://alsandwellness.blogspot.com/2021/09/living-in-slow-lane-of-als.html">https://alsandwellness.blogspot.com/2021/09/living-in-slow-lane-of-als.html</a><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: left;"><a href="https://alsandwellness.blogspot.com/2022/02/how-i-shift-into-als-manual-mode.html">https://alsandwellness.blogspot.com/2022/02/how-i-shift-into-als-manual-mode.html</a></p><p class="MsoNoSpacing" style="text-align: left;"><o:p></o:p></p>
<p class="MsoNoSpacing" style="text-align: center;"><o:p><b>------------------------------------</b> </o:p></p>
<p style="text-align: left;"><i><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiK6cVr-aWKSAApVlQsGHraqhnUz_KgGgctkRLQC1LSSL4CIx7rHHfYNYVjwdgXBWAB3-_Q9f6p6qk26vREeHVpVq7bU3RmlzTH1zTMP5EKH3dqnVqOxeepX8z4_DcOch_hcU8LGMjV8JbC1251Njbk3VLaS8ZaDV4NgdDOTQfG9R9RJMUKRDx3Pron2GJ/s664/BB2.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiK6cVr-aWKSAApVlQsGHraqhnUz_KgGgctkRLQC1LSSL4CIx7rHHfYNYVjwdgXBWAB3-_Q9f6p6qk26vREeHVpVq7bU3RmlzTH1zTMP5EKH3dqnVqOxeepX8z4_DcOch_hcU8LGMjV8JbC1251Njbk3VLaS8ZaDV4NgdDOTQfG9R9RJMUKRDx3Pron2GJ/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS and Wellness Blog</td></tr></tbody></table><br /><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><br /></span></i></p><p><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><br /></span></i></p><p><i><span style="color: #212121;"><span style="font-family: trebuchet; font-size: large;">We
live and learn, or, perhaps more importantly, we learn and live<o:p></o:p></span></span></i></p>
<p><i><span style="color: #212121;"><span style="font-family: trebuchet;"><span style="font-size: medium;">Jerry
Pratchett</span><span style="font-size: large;"><o:p></o:p></span></span></span></i></p>
<p><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><br /></span></i></p><p><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><br /></span></i></p><p><br /></p><p><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">A
version of this post first appeared as my column on the </span></i><a href="https://alsnewstoday.com/" target="_blank"><i><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;">ALS News Today </span></i></a><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">website.</span></i></p></div><p><br /></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1650717271407428985.post-36315601428566771492023-08-29T15:10:00.001-07:002023-09-23T14:24:04.467-07:00How Journaling Helped Me Adjust to Living With ALS<p></p><div style="text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUHin0v5EknZ3w14tdP5I-hp302gVBCxCFVebQHg8rXYqundRPhP1lOwSEmFTNTmVnhcxQw_MG66hkfzi17xZIHGunPhdAKGW8ebphGdG8RSXw3ill2TO08su1hFED0vAKFKeFDg6XPaPOsm6BnkduT4hYk5pKeBCh4StlaDi76l4I2kTvO0ghto2oQdv7/s940/ALS%20journaling.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="788" data-original-width="940" height="335" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUHin0v5EknZ3w14tdP5I-hp302gVBCxCFVebQHg8rXYqundRPhP1lOwSEmFTNTmVnhcxQw_MG66hkfzi17xZIHGunPhdAKGW8ebphGdG8RSXw3ill2TO08su1hFED0vAKFKeFDg6XPaPOsm6BnkduT4hYk5pKeBCh4StlaDi76l4I2kTvO0ghto2oQdv7/w400-h335/ALS%20journaling.jpg" width="400" /></a></div><div style="text-align: center;"><br /></div><p></p><p class="MsoNormal" style="line-height: normal; text-align: justify;">A question I’m
often asked by newly diagnosed ALS patients is, “What do you think is
the one thing that helped you adjust so well to living with ALS?” My
answer is always the same: There’s no <i>one thing;</i> it’s the
synergy of many strategies and habits that have helped me through the years.<o:p></o:p></p><div>
<p class="MsoNormal" style="line-height: normal; text-align: justify;">The obvious ones
are having support from my doctor and her team at the ALS clinic, along
with medication, exercise, a quality diet, and so on. Not so obvious, but
equally important for me, is keeping a daily journal.<o:p></o:p></p>
<h3 style="line-height: normal; margin: 12pt 0in; text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">How I began</span></h3>
<p class="MsoNormal" style="line-height: normal; text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">I
learned I had </span><span style="color: #0a617c; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">ALS</span><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";"> in late 2010. One of the
first things I did was purchase a small, 7-by-5-inch spiral notebook and dedicate
it to chronicling my ALS journey. I had never journaled before, but from my
experiences teaching wellness to people with chronic conditions, I knew
journaling was extremely helpful for them. Now I was the patient in need of all
the help I could get.<o:p></o:p></span></p>
<p class="MsoNormal" style="line-height: normal; text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">At
first, I was intimidated by all of the blank pages in front of me, and my notes
were brief and to the point. For example, here’s my very first entry:<o:p></o:p></span></p>
<p class="MsoNormal" style="line-height: normal; text-align: center;"><i><u><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">1/10/2011
— Monday</span></u></i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";"><o:p></o:p></span></p>
<p class="MsoNormal" style="line-height: normal; text-align: justify;"></p><ul><li><i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">Upper
body: Resistance band exercises for arms, 8 reps/1 time</span></i></li><li><i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">Core:
Chair crunches, 20 reps/2 times</span></i></li><li><i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">Lower
body: Seated leg extensions, 5 reps/1 time</span></i></li><li><i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">Balance:
Tai chi routine, 15 minutes</span></i></li><li><i><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">Comments: Energy OK, felt tired by evening. Have heavy feet and
heavy hands.</span></i></li></ul><p></p>
<p class="MsoNormal" style="line-height: normal; text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";"><br /></span></p><p class="MsoNormal" style="line-height: normal; text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">About
a month later, following a visit to the ALS clinic, I decided to list
suggestions from my doctor and physical therapist. This led to creating a new
page in the back of the notebook for questions and topics to bring up at the
next visit.<o:p></o:p></span></p>
<h3 style="line-height: normal; margin: 12pt 0in; text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">My journaling improved</span></h3>
<p class="MsoNormal" style="line-height: normal; text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">My
daily journaling evolved into detailed descriptions of exercise routines, books
I was reading, and my reflections on events of the day. I even dedicated a full
page to what I labeled as “Grand Goals.” These were the skills I wanted to keep
performing independently, such as getting into and out of a car<b>, </b></span><b><a href="https://alsandwellness.blogspot.com/2020/02/the-power-of-just-one-chair-squat.html"><span style="color: #0a617c; text-decoration-line: none;">sitting on and standing up from a chair</span></a></b><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">, using a toilet, getting down
to the floor and up again, and walking with a rollator.<o:p></o:p></span></p>
<p class="MsoNormal" style="line-height: normal; text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">Writing
in my little notebook at the end of each day kept me focused on my goals and on
track with daily exercises. It was a welcome therapeutic method to sort through
my negative feelings about having ALS.<o:p></o:p></span></p>
<p class="MsoNormal" style="line-height: normal; text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">Medical
experts </span><b><a href="https://positivepsychology.com/benefits-of-journaling/"><span style="color: #0a617c; text-decoration-line: none;">recommend journaling</span></a></b><b><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";"> </span></b><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">to
help us </span><b><a href="https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=1&contentid=4552"><span style="color: #0a617c; text-decoration-line: none;">accept our mental experiences</span></a></b><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">, and as a way to get unstuck and move toward acceptance of our
current situation.<o:p></o:p></span></p>
<h3 style="line-height: normal; margin: 12pt 0in; text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">My tips</span></h3>
<p class="MsoNormal" style="line-height: normal; text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">If
you want to give journaling a try, I’ll share a few of my tips. There are many
options besides having to write in a notebook. You can use an online document,
or if typing is difficult, consider using a talk-to-text app.<o:p></o:p></span></p>
<p class="MsoNormal" style="line-height: normal; text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">If,
like me, you are worried about how to begin, I suggest you fill the first page
with a collection of positive quotes. Then create lists of goals and questions
for your doctor. Once your notebook has a few “used” pages, you can start
adding daily thoughts guilt-free.<o:p></o:p></span></p>
<p class="MsoNormal" style="line-height: normal; text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">Remember
that journaling can be a new habit for you. It needs at least three weeks to
become part of <b>your </b></span><b><a href="https://alsandwellness.blogspot.com/2023/08/how-my-daily-routine-helps-me-live-with.html"><span style="color: #0a617c; text-decoration-line: none;">daily routine</span></a></b><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">.
My journaling not only was a habit, but it also <i>evolved</i> <i>ME! </i>I
became so comfortable writing about my ALS that I </span><a href="https://alsandwellness.blogspot.com/2015/07/new-book-align-lengthen-strengthen-your.html"><span style="color: #0a617c; text-decoration-line: none;"><b>wrote a book</b></span></a><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">,
started a blog, and have spent the past five years writing a </span><a href="https://alsnewstoday.com/living-well-with-als-dagmar-munn/"><span style="color: #0a617c; text-decoration-line: none;">w<b>eekly column</b></span></a><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";"><b> </b>for </span><a href="https://alsnewstoday.com/"><i><span style="color: #0a617c; text-decoration-line: none;">ALS News Today</span></i></a><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">.<o:p></o:p></span></p>
<p class="MsoNormal" style="line-height: normal; text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">Maybe
writing a blog isn’t one of your goals, although I do encourage you to give it
a go. Until then, consider starting a daily journal. <o:p></o:p></span></p>
<p class="MsoNormal" style="line-height: normal; text-align: justify;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";">It’s
one more valuable strategy to help you learn how to live well while living with
ALS.<o:p></o:p></span></p><p class="MsoNormal" style="line-height: normal; mso-margin-bottom-alt: auto; mso-margin-top-alt: auto;"><span style="color: #212121; mso-bidi-font-family: Calibri; mso-bidi-theme-font: minor-latin; mso-fareast-font-family: "Times New Roman";"><b>-----------------------------------------------------</b></span></p>
<h2 style="margin-bottom: .25in; margin-left: 0in; margin-right: 0in; margin-top: 24.0pt;"><i><span style="color: #212121; font-size: 11.5pt; line-height: 107%; text-transform: uppercase;">For more motivation on this topic, I SUGGEST THESE
POSTS</span></i><span class="MsoHyperlink"><span style="color: #111111; text-transform: uppercase;"><o:p></o:p></span></span></h2>
<p class="MsoNormal" style="line-height: normal; margin-bottom: 3.0pt; margin-left: .5in; margin-right: 0in; margin-top: 0in; mso-list: l0 level1 lfo1; tab-stops: list .5in; text-indent: 0in;"><!--[if !supportLists]--><span class="MsoHyperlink"><span style="font-family: Symbol; font-size: 10pt;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variation-settings: normal; line-height: normal;">
</span></span></span><!--[endif]--><span class="MsoHyperlink"><b><span style="background: white; font-family: Arial, sans-serif;"><a href="https://alsandwellness.blogspot.com/2022/05/how-i-use-showing-up-to-help-me-live.html" target="_blank">How I Use Showing Up to Help Me Live with ALS</a></span></b></span><span class="MsoHyperlink"><b><o:p></o:p></b></span></p>
<p class="MsoNormal" style="line-height: normal; margin-bottom: 3.0pt; margin-left: .5in; margin-right: 0in; margin-top: 0in; mso-list: l0 level1 lfo1; tab-stops: list .5in; text-indent: 0in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10pt;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]--><span class="MsoHyperlink"><b><span style="background: white; font-family: Arial, sans-serif;"><a href="https://alsandwellness.blogspot.com/2021/10/these-5-things-keep-me-motivated.html" target="_blank">These 5 Things Keep Me Motivated</a></span></b></span><b><o:p></o:p></b></p><p class="MsoNormal" style="line-height: normal; margin-bottom: 3.0pt; margin-left: .5in; margin-right: 0in; margin-top: 0in; mso-list: l0 level1 lfo1; tab-stops: list .5in; text-indent: 0in;"><span class="MsoHyperlink"><b><br /></b></span></p>
<p><span style="font-family: Arial, sans-serif; font-size: 11.5pt;"> <table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY1xbFRvc27P4NzekKNateOyYSDvGxQaDXbpigmzs5_OcnoBY0wXnFDw3I03FcWbrRvSFODJZ_KXpzJGkbY_PWUwUmEpHkaaetXhhs97Ls0KU9sZfw4U7DiqfmqeXOckI6MbnLjXScRdM3_eNHnwkMKlpBvu8foWdtVEvI6PsTg5u5POf4icB-me-29jG-/s664/BB2.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY1xbFRvc27P4NzekKNateOyYSDvGxQaDXbpigmzs5_OcnoBY0wXnFDw3I03FcWbrRvSFODJZ_KXpzJGkbY_PWUwUmEpHkaaetXhhs97Ls0KU9sZfw4U7DiqfmqeXOckI6MbnLjXScRdM3_eNHnwkMKlpBvu8foWdtVEvI6PsTg5u5POf4icB-me-29jG-/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS and Wellness Blog</td></tr></tbody></table><br /></span></p>
<p style="text-align: center;"><i><span style="color: #212121;"><span style="font-family: times; font-size: large;"><br /></span></span></i></p><p style="text-align: center;"><i><span style="color: #212121;"><span style="font-family: times; font-size: large;">Journaling
is paying attention to the inside for the purpose of living well from the inside
out.<o:p></o:p></span></span></i></p>
<p style="text-align: center;"><i><span style="color: #212121;"><span style="font-family: times;"><span style="font-size: medium;">Bobby
Knight</span><span style="font-size: large;"><o:p></o:p></span></span></span></i></p><p style="text-align: center;"><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><br /></span></i></p><p><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><br /></span></i></p><p><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><br /></span></i></p><p><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">A
version of this post first appeared as my column on the </span></i><a href="https://alsnewstoday.com/" target="_blank"><i><span style="font-family: "Arial",sans-serif; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-theme-font: major-fareast;">ALS News Today </span></i></a><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">website.</span></i></p></div><p><br /></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1650717271407428985.post-72776708042670533262023-08-19T15:37:00.002-07:002023-08-29T15:10:34.253-07:00How My Daily Routine Helps Me Live With ALS<p style="text-align: center;"></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLLU6_he4S7zltQ4KEZUScF0Jzp43jpFyAGC-G7eLi2OERIAPb1lUb_dgkFkWjQPZJIbXu4OBmVXwu3ruaySH3O3p5OsL-fs9nVd6iPiHvxQW4dVHSYnPd9q06BglVL7EAWD8WZXbBtlRL9Ct5Pz88iwKK9EsB1NTHZtQJef7sGTINCJy5E_RLHqKd2LYU/s940/daily%20routine.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="788" data-original-width="940" height="335" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhLLU6_he4S7zltQ4KEZUScF0Jzp43jpFyAGC-G7eLi2OERIAPb1lUb_dgkFkWjQPZJIbXu4OBmVXwu3ruaySH3O3p5OsL-fs9nVd6iPiHvxQW4dVHSYnPd9q06BglVL7EAWD8WZXbBtlRL9Ct5Pz88iwKK9EsB1NTHZtQJef7sGTINCJy5E_RLHqKd2LYU/w400-h335/daily%20routine.png" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;"><br /></div><p></p><p style="text-align: justify;"><span face="Calibri, sans-serif" style="color: #212121; font-size: 11pt;">Ask me what I think about
having a do-the-same-thing-every-day routine </span><span face=""Calibri",sans-serif" style="color: #212121; font-size: 11pt; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">and I’ll tell you it is great. Especially now that I live
with ALS, having and following a consistent daily routine is absolutely vital
to my health.<o:p></o:p></span></p><p style="text-align: justify;"><span face=""Calibri",sans-serif" style="color: #212121; font-size: 11pt; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">A daily routine is something almost everyone has experienced at
some point — from our childhood through our teen years and into adulthood. It’s
the comfortable and predictable timetable of our days that helps us cope with
change, create healthy habits, and reduce stress.<o:p></o:p></span></p><p style="text-align: justify;"><span face=""Calibri",sans-serif" style="color: #212121; font-size: 11pt; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">And yes, sometimes daily routines can become boring.<o:p></o:p></span></p><p style="text-align: justify;"><span face=""Calibri",sans-serif" style="color: #212121; font-size: 11pt; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">That’s where the welcome disruptions of vacations, holidays, or
trying something new fit in. Later, when we return to our daily routine, we
feel refreshed and revived. But a really big disruption, like being diagnosed
with ALS, can shatter a daily routine for weeks, months, or longer.<o:p></o:p></span></p><p style="text-align: justify;"><span face=""Calibri",sans-serif" style="color: #212121; font-size: 11pt; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">For me, learning to live with ALS meant building back
my daily routine one piece at a time. Here’s what I did:<o:p></o:p></span></p><h3 style="text-align: justify;"><b><span face=""Calibri",sans-serif" style="color: #212121; font-size: 11pt; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">Simple strategies</span></b></h3><p style="text-align: justify;"><span face=""Calibri",sans-serif" style="color: #212121; font-size: 11pt; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">My ALS symptoms made my muscles feel stiff, and<b> <a href="https://alsandwellness.blogspot.com/2021/09/living-in-slow-lane-of-als.html">it
took so much time to do simple things</a></b> that I had to simplify my
living environment. This included my clothes. I traded out all of my pants with
difficult zippers for easy pull-on pants with an elastic waistband. Shirts and
tops with buttons and hard-to-reach closures have all been donated elsewhere
and replaced by loose, T-shirt-type tops in all sorts of colors.<o:p></o:p></span></p><p style="text-align: justify;"><span face=""Calibri",sans-serif" style="color: #212121; font-size: 11pt; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">Pre-ALS, I used to be up and out the door for an early-morning
walk and workout. Now, my exercise is split up into short bouts scattered
throughout the day.<o:p></o:p></span></p><p style="text-align: justify;"><span face=""Calibri",sans-serif" style="color: #212121; font-size: 11pt; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">One special activity that helped me create a new daily routine
was keeping a journal. Once a day, I’d jot down how I felt, what my challenges
were, my goals, and something I was grateful for. This led to a simple formula
for daily living based on the new habits I was developing.<o:p></o:p></span></p><p style="text-align: justify;"><span face=""Calibri",sans-serif" style="color: #212121; font-size: 11pt; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">I call my plan the “4 Ms,” which stands for medication,
mindfulness, motion, and mood. <a href="https://alsnewstoday.com/columns/formula-wellness-simple/">You
can read more about my 4 Ms here</a>.<o:p></o:p></span></p><h3 style="text-align: justify;"><b><span face=""Calibri",sans-serif" style="color: #212121; font-size: 11pt; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">The test of time</span></b></h3><p style="text-align: justify;"><span face=""Calibri",sans-serif" style="color: #212121; font-size: 11pt; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">My simple daily routine has served me well these past 13 years
that I’ve been living with ALS. Although essentially the same, it has evolved
in response to my symptom changes, and weathered disruptions from happy
events as well as challenging times. I’ve learned to rely on a strategy
to revive my daily routine and get me back into the swing of things.<o:p></o:p></span></p><p style="text-align: justify;"><span face=""Calibri",sans-serif" style="color: #212121; font-size: 11pt; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">Of course, <b><a href="https://alsandwellness.blogspot.com/2022/01/how-self-care-minis-help-me-through.html">paying
attention to self-care </a></b>is another essential piece of my
daily routine. Pausing to breathe, listening to music, or laughing at funny pet
videos are some simple ways I give myself a mini self-care break.<o:p></o:p></span></p><p style="text-align: justify;"><span face=""Calibri",sans-serif" style="color: #212121; font-size: 11pt; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;">If you’ve experienced ALS-related disruptions to your daily
routine, try my tips and strategies. Together we can help each other learn to
live well while living with ALS.<o:p></o:p></span></p><p style="text-align: center;"><span face=""Calibri",sans-serif" style="color: #212121; font-size: 11pt; mso-ascii-theme-font: minor-latin; mso-bidi-theme-font: minor-latin; mso-hansi-theme-font: minor-latin;"><b>---------------------------------------</b></span></p><h2 style="margin-bottom: .25in; margin-left: 0in; margin-right: 0in; margin-top: 24.0pt; margin: 24pt 0in 0.25in;"><i><span style="color: #212121; font-size: 11.5pt; line-height: 107%; text-transform: uppercase;">Need more inspiration ABOUT Daily ROUTINES? I
SUGGEST THESE POSTS:</span></i><span style="color: #111111; text-transform: uppercase;"><o:p></o:p></span></h2><p class="MsoNormal" style="line-height: normal; margin-bottom: 3.0pt; margin-left: .5in; margin-right: 0in; margin-top: 0in; margin: 0in 0in 3pt 0.5in; mso-list: l0 level1 lfo1; tab-stops: list .5in; text-indent: 0in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]--><span face=""Arial",sans-serif"><a href="https://alsandwellness.blogspot.com/2023/01/how-to-revive-your-daily-life-routines.html">How
to Revive Your Daily Life Routines</a><o:p></o:p></span></p><p class="MsoNormal" style="line-height: normal; margin-bottom: 3.0pt; margin-left: .5in; margin-right: 0in; margin-top: 0in; margin: 0in 0in 3pt 0.5in; mso-list: l0 level1 lfo1; tab-stops: list .5in; text-indent: 0in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 11.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variation-settings: normal; line-height: normal;"> <span style="color: #2b00fe;">
</span></span></span><span style="color: #2b00fe;"><a href="https://alsandwellness.blogspot.com/2022/03/my-tricks-for-adding-movement-to-my-day.html" target="_blank"><span face=""Arial",sans-serif" style="background: white;">My Tricks
for Adding Movement to My Day</span></a><o:p></o:p></span></p><p class="MsoNormal" style="line-height: normal; margin-bottom: 3.0pt; margin-left: .5in; margin-right: 0in; margin-top: 0in; margin: 0in 0in 3pt 0.5in; mso-list: l0 level1 lfo1; tab-stops: list .5in; text-indent: 0in;"><br /></p><p><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"> </span></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD_ymnmDMclGhrVbvR2MK-qmjwE2fMZzfKb5AxWFSIyvC04gpLH7V3EpNSEan9QGbgM156zkTGaj_gorfpldFFm7kCiLQRLGR73ZD__VFDDBv1R0SYCbg9xXoWDEviCYB3tIXEePlW330K3n4TEutqWe2Yr0d8WPWWQ2WBicZUG4S6_C41fqsv78dPg0BT/s664/BB2.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiD_ymnmDMclGhrVbvR2MK-qmjwE2fMZzfKb5AxWFSIyvC04gpLH7V3EpNSEan9QGbgM156zkTGaj_gorfpldFFm7kCiLQRLGR73ZD__VFDDBv1R0SYCbg9xXoWDEviCYB3tIXEePlW330K3n4TEutqWe2Yr0d8WPWWQ2WBicZUG4S6_C41fqsv78dPg0BT/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS and Wellness Blog</td></tr></tbody></table><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><br /></span><p></p><p style="text-align: center;"><i><span style="color: #212121;"><span style="font-family: times; font-size: large;"><br /></span></span></i></p><p style="text-align: center;"><i><span style="color: #212121;"><span style="font-family: times; font-size: large;">Do
something today </span></span></i></p><p style="text-align: center;"><i><span style="color: #212121;"><span style="font-family: times; font-size: large;">that your future self will thank you for...<o:p></o:p></span></span></i></p><p style="text-align: center;"><i><span style="color: #212121;"><span style="font-family: times; font-size: medium;">Unknown</span><span face="Arial, sans-serif" style="font-size: 11.5pt;"><o:p></o:p></span></span></i></p><p><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"> </span></p><p>
</p><p><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"><br /></span></i></p><p><br /></p><p><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">A
version of this post first appeared as my column on the </span></i><a href="https://alsnewstoday.com/" target="_blank"><i><span face=""Arial",sans-serif" style="font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-theme-font: major-fareast;">ALS News Today </span></i></a><i><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">website.<o:p></o:p></span></i></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1650717271407428985.post-19711779512931591682023-06-18T14:06:00.005-07:002023-08-19T15:37:59.395-07:00Why Am I Singing Through a Straw, You Might Ask?<p></p><div style="text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWgOeKaxvUXKSp7uR8mpzNNWN_5P61o_zyiuZJdhm6yi7VJ57fYoTXMrrpfcUH3Q00DH4J27WxDk4PfJKUUa0H_MyPkixF7fqc8nGovYOpRgXDw99K8V7EsMrx-kKJr7Z8mR6Gsbvj2D9VTcQdAollhE6KYNL4dKdAa2Y-mJN85LvpJoUAH1qaFcYksg/s940/misc%20FB%20blog.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="788" data-original-width="940" height="536" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWgOeKaxvUXKSp7uR8mpzNNWN_5P61o_zyiuZJdhm6yi7VJ57fYoTXMrrpfcUH3Q00DH4J27WxDk4PfJKUUa0H_MyPkixF7fqc8nGovYOpRgXDw99K8V7EsMrx-kKJr7Z8mR6Gsbvj2D9VTcQdAollhE6KYNL4dKdAa2Y-mJN85LvpJoUAH1qaFcYksg/w640-h536/misc%20FB%20blog.jpg" width="640" /></a></div><div style="text-align: center;"><br /></div><p></p><p style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">I’m
always open to learning new things, especially when they involve simple ways to
improve my </span><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;">life
with ALS<span style="color: #212121;">. When I come across something super
helpful, I just have to share it with my readers.<o:p></o:p></span></span></p><div>
<p style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">My
most recent discovery involves a simple plastic straw. In fact, it’s become a
permanent addition to my daily exercise routine.<o:p></o:p></span></p>
<p style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">For
the past six years, I’ve been challenged by the </span><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;">ALS symptom<span style="color: #212121;"> of </span></span><a href="https://alsnewstoday.com/speech-problems/"><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;"><b>dysarthria</b></span></a><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">, which affects my ability
to speak. Dysarthria feels like having a bad case of laryngitis and a lazy
tongue that is two steps behind what my mind wants to say. Thus, when I speak,
it’s with a gravelly, monotone voice. I’m often asked to repeat myself, which I
do, but I default to saying the same words, only louder. It’s frustrating, and
speaking this way strains my vocal cords and throat.<o:p></o:p></span></p>
<p style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">But
maintaining the ability to communicate is important for me. So, in the past few
years, I’ve explored and experimented with </span><a href="https://alsandwellness.blogspot.com/2018/03/als-dysarthria-use-these-innovative.html"><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;"><b>various ways to keep
and preserve</b></span></a><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"> the little voice that I do have.<o:p></o:p></span></p>
<p style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">In
addition to practicing </span><a href="https://alsandwellness.blogspot.com/2020/01/how-blowing-bubbles-helps-me-breathe.html"><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;"><b>diaphragmatic breathing</b></span></a><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><b> </b>and
doing exercises to improve my posture, I learned vocal techniques used by
actors and singers as taught in <b>“</b></span><a href="http://www.andreacaban.com/als"><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;"><b>The Living Speech
Series,</b></span></a><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><b>”</b> by Andrea Caban.<o:p></o:p></span></p>
<h3 style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">What
about the straw?</span></h3>
<p style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">Over
the holidays, I watched a </span><a href="https://youtu.be/zCa4So3GzEo"><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;"><b>YouTube video</b></span></a><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"> featuring
a person with </span><a href="https://www.ataxia.org/what-is-ataxia/"><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;"><b>ataxia</b></span></a><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><b>.</b> The
other guest was a speech-language pathologist (SLP) who described a series of
techniques called </span><a href="https://www.voicescienceworks.org/sovt-exercises.html"><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;"><b>semi-occluded vocal
tract (SOVT) exercises</b></span></a><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">. These exercises are used in many warmup and
treatment protocols for professional singing, and by speaking coaches and voice
and speech therapists.<o:p></o:p></span></p>
<p style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">Intrigued,
I learned that SOVT exercises also use plastic drinking straws. The SLP
described how spending a few minutes everyday breathing, humming, and singing
through a straw can relax the muscles surrounding the vocal cords, as well as in
the neck, and reduce fatigue when speaking.<o:p></o:p></span></p>
<p style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">Of
course, I went on a deep internet dive to find out more and discovered a wealth
of </span><a href="https://youtu.be/SnyiT8VAtPU"><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;"><b>how-to videos</b></span></a><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><b> </b>and<b> </b></span><a href="https://www.tandfonline.com/doi/abs/10.1080/17549507.2020.1787514?journalCode=iasl20"><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;"><b>supporting research</b></span></a><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><b>.</b><o:p></o:p></span></p>
<h3 style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">A
quick how-to</span></h3>
<p style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">Here’s
how you do it: Sit tall and place a plastic drinking straw in your mouth. Hold
the straw lightly with one hand, and:<o:p></o:p></span></p>
<p style="margin-left: 0.5in; text-align: justify; text-indent: -0.25in;"><!--[if !supportLists]--><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt; mso-fareast-font-family: Arial;">1.<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]--><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">Breathe slowly and evenly for a few minutes.<o:p></o:p></span></p>
<p style="margin-left: 0.5in; text-align: justify; text-indent: -0.25in;"><!--[if !supportLists]--><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt; mso-fareast-font-family: Arial;">2.<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]--><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">Inhale and exhale with a long “<i>Ahhhh</i>” sound.<o:p></o:p></span></p>
<p style="margin-left: 0.5in; text-align: justify; text-indent: -0.25in;"><!--[if !supportLists]--><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt; mso-fareast-font-family: Arial;">3.<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variation-settings: normal; line-height: normal;">
</span></span><!--[endif]--><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">Try humming or even “singing” a song.<o:p></o:p></span></p>
<p style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">Whenever
I finish these steps, my throat feels very relaxed.<o:p></o:p></span></p>
<p style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">These
simple exercises can be repeated anytime you feel your voice or throat need a
rest. Here’s a good, short video on the </span><a href="https://youtu.be/0xYDvwvmBIM"><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;"><b>vocal straw exercise</b></span></a><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"> to help you follow along.<o:p></o:p></span></p>
<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen="" class="BLOG_video_class" height="266" src="https://www.youtube.com/embed/0xYDvwvmBIM" width="320" youtube-src-id="0xYDvwvmBIM"></iframe></div><p style="text-align: center;"><a href="https://youtu.be/0xYDvwvmBIM"><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;">https://youtu.be/0xYDvwvmBIM</span></a></p><p style="text-align: center;"><br /></p>
<p style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">Are
you ready to sing through a straw? I hope you give it a try. <o:p></o:p></span></p>
<p style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">Let’s
keep helping each other learn how to live well while living with ALS.<o:p></o:p></span></p><p style="text-align: center;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">---------------------------------------</span></p><p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEij6dPT1790tcbaNVxN9FyfKA6Gx099tWwROq7A7rK69IKfUt_x2Hgdqf69OFFUltmqbGK3JpeKkx97QSrzB5eGQGq0fSMS8d676nZqcLZoYmsFcZz6ZDvaSGOsYneonLej09HEgcTXN3Q6oemBpRPipXeaRJnQHXHiJxl4vwy79N1CAputypRCOx6wQA/s664/BB2.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEij6dPT1790tcbaNVxN9FyfKA6Gx099tWwROq7A7rK69IKfUt_x2Hgdqf69OFFUltmqbGK3JpeKkx97QSrzB5eGQGq0fSMS8d676nZqcLZoYmsFcZz6ZDvaSGOsYneonLej09HEgcTXN3Q6oemBpRPipXeaRJnQHXHiJxl4vwy79N1CAputypRCOx6wQA/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS and Wellness Blog</td></tr></tbody></table><br /><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><br /></span></p><p style="text-align: center;"><i><span style="color: #212121;"><span style="font-family: trebuchet; font-size: large;">Happiness is ...humming often, and with conviction.<o:p></o:p></span></span></i></p><p style="text-align: center;"><i><span style="color: #212121;"><span style="font-family: trebuchet; font-size: medium;">Anonymous</span></span></i></p><p><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><br /></span></p><p><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><br /></span></p><p><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><br /></span></p><p><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><br /></span></p><p><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><br /></span></p>
<p><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">A
version of this post first appeared as my column on the </span></i><a href="https://alsnewstoday.com/" target="_blank"><i><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;">ALS News Today </span></i></a><i><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">website.</span></i></p></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1650717271407428985.post-48289835660409605752023-05-30T14:44:00.001-07:002023-06-18T14:07:10.676-07:00My ‘Go-along’ Adventures Add Humor to Life With ALS<p> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdJmuzswa94Fo2bFUpblyMAHPO6ZRq2cSrMeZtGb7-GYFOOWvJ3foJnoPHv5Pz-DiID01gb28WwuWT-qwqMyuyGR7ZfLpxDA-MhvieDeanVnGd2Xl4C3g0CdpvCZ6MORo7gEVNBWtQ41gqkAK3KPYl_9DpYmts3FrY1v2pJkbD8wFW2jl-ol4GWrpc1A/s940/misc%20FB%20blog%20(2).png" imageanchor="1" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="788" data-original-width="940" height="536" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhdJmuzswa94Fo2bFUpblyMAHPO6ZRq2cSrMeZtGb7-GYFOOWvJ3foJnoPHv5Pz-DiID01gb28WwuWT-qwqMyuyGR7ZfLpxDA-MhvieDeanVnGd2Xl4C3g0CdpvCZ6MORo7gEVNBWtQ41gqkAK3KPYl_9DpYmts3FrY1v2pJkbD8wFW2jl-ol4GWrpc1A/w640-h536/misc%20FB%20blog%20(2).png" width="640" /></a></p><p><br /></p><p style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">I
use many strategies to keep myself engaged in life and avoid getting <a href="https://alsnewstoday.com/als-mental-health/"><b>pulled down mentally by my
ALS</b></a>. Being a “go-along” is one of those strategies, and it’s a perfect
partner to my </span><a href="https://alsandwellness.blogspot.com/2022/05/how-i-use-showing-up-to-help-me-live.html"><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;"><b>showing up</b></span></a><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"><b>.</b><o:p></o:p></span></p><p style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">But
being a go-along — that is, accompanying my husband on his various errands —
doesn’t make me feel like I’m just a bump on a log. Instead, I’ve learned quite
a lot during our outings together. Plus, I’m helpful — er, sort of (wink, wink)<o:p></o:p></span></p><h3 style="text-align: justify;"><b><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">Talking
boxes</span></b></h3><p style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">One
habit left over from the pandemic is regularly visiting the </span><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;">drive-thru lane to
order a meal<span style="color: #212121;">. Another leftover is the dreaded
malfunctioning speaker. My husband doesn’t have much patience for fast-talking
order-takers and scratchy speakers, so he ends up turning to me and asking,
“What did they say?”<o:p></o:p></span></span></p><p style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">Only
my version of what they said, speaking with my </span><a href="https://alsandwellness.blogspot.com/2017/02/do-you-speak-l-s-ky-als-humor.html"><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;"><b>ALS-affected voice</b></span></a><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">, is
often even more garbled and slurred — so much that we’re reduced to giddy
laughter, leaving the order taker on the other side of the box wondering if
we’re just a couple of rowdy teenagers out for a good time.<o:p></o:p></span></p><h3 style="text-align: justify;"><b><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">I’m
a people-watcher</span></b></h3><p style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">Usually,
my go-along adventures involve me waiting in our van while my husband pops into
a store. Rather than spend my waiting time hunched over a cell phone, I prefer
to observe my surroundings and the people walking by. OK, OK, I’m not a
stalker, but people-watching helps me when I’m dealing with the challenges
of </span><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;">living
with ALS<span style="color: #212121;">.<o:p></o:p></span></span></p><p style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">For
instance, there was a time when I was adjusting to </span><a href="https://alsandwellness.blogspot.com/2021/03/how-i-learned-to-like-my-afos.html"><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;"><b>wearing ankle-foot
orthoses</b></span></a><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"> (AFOs) while depending on a </span><a href="https://www.performancehealth.com/articles/walker-vs-rollator-how-to-choose-the-best-walking-aid-for-you"><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;"><b>rollator</b></span></a><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"> to
help me walk. From my parking lot view, I was surprised at the number of people
who walked with a limp, a hitch in their step, or a slight lean to one side. I
even spotted a few people using rollators and wearing various styles of AFOs.
That helped me realize I’m not the only one with walking issues. I’m not alone
in facing challenges.<o:p></o:p></span></p><h3 style="text-align: justify;"><b><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">Dogs
in cars</span></b></h3><p style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">One
time, we had to make a quick stop at one of those gas-and-go convenience
stores. While I waited, I rolled my window halfway down and began checking out
the cars parked on either side of our van. I immediately noticed that the heads
of those in the nearby cars were actually large dogs awaiting their owner’s
return. Whenever a customer left the store and darted a little too close to one
of the cars with a dog, loud barks and angry growls poured out of their
half-open windows. It worked. Customers gave those cars a wide berth.<o:p></o:p></span></p><p style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">On
the way home, a fun idea popped into my head as I shared the experience with my husband. The next time I had to wait alone in the van, my husband asked,
“Will you be, OK?” as he got out. “Yup,” I replied, “just roll the window
halfway down and if anyone gets too close, I’ll just bark.” We shared a laugh,
and “I’ll just bark” has become our “I’ll be, OK” catchphrase ever since.<o:p></o:p></span></p><p style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">For
me, </span><a href="https://alsnewstoday.com/living-well-with-als-dagmar-munn/"><span style="font-family: "Arial",sans-serif; font-size: 11.5pt;"><b>living well with ALS</b></span></a><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"> means
changing my perspective, learning to adapt, and having a sense of humor. Try it
for yourself. <o:p></o:p></span></p><p style="text-align: justify;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">Together,
we can help each other learn how to live with ALS.<o:p></o:p></span></p><p style="text-align: center;"><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;">--------------------------------------</span></p><p class="MsoNoSpacing"><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcbOAxWbUx3bEQf-JOjCFbbcUSKhOzyw56IDEPcbE0uPdfM24pczHGLLSuFlFAVr9qA0XldqpX_ulISiWpMJX60G-cDBhDHKDraolBzbFn_l2P7VS8N2ze3XTVYYSsyDI-cV51ZE6oA8tjXbh-3VwTDaqPlSSAqIC7w8M_w3VVWfpQHCDj4isxbRG3fA/s664/BB2.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgcbOAxWbUx3bEQf-JOjCFbbcUSKhOzyw56IDEPcbE0uPdfM24pczHGLLSuFlFAVr9qA0XldqpX_ulISiWpMJX60G-cDBhDHKDraolBzbFn_l2P7VS8N2ze3XTVYYSsyDI-cV51ZE6oA8tjXbh-3VwTDaqPlSSAqIC7w8M_w3VVWfpQHCDj4isxbRG3fA/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS and Wellness Blog</td></tr></tbody></table><br /><i><br /></i></p><p class="MsoNoSpacing" style="text-align: center;"><i><span style="color: #212121;"><span style="font-family: times; font-size: x-large;">Every time you are able to find some humor in a difficult situation, you win.</span></span></i></p><p class="MsoNoSpacing" style="text-align: center;"><i>Anonymous</i></p><p class="MsoNoSpacing"><i><br /></i></p><p class="MsoNoSpacing"><i><br /></i></p><p class="MsoNoSpacing"><i><br /></i></p><p class="MsoNoSpacing"><i>A version of this post first appeared as my
column on the </i><a href="https://alsnewstoday.com/" target="_blank"><i>ALS
News Today </i></a><i>website.</i></p><p><br /></p><p><br /></p><p>
</p><p><span style="color: #212121; font-family: "Arial",sans-serif; font-size: 11.5pt;"> </span></p>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1650717271407428985.post-31322691881987797242023-05-24T10:05:00.003-07:002023-05-30T14:45:21.708-07:00What I Thought Was My ALS - - Was Actually an Impostor Symptom<p></p><div style="text-align: center;"> <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZc3HakiMD8TSt6TlXlSlQCrw8JS_DlUIdf2p9g7QlOafh0ycj8WGu6NxtFKyxuGFYsFl1ZLZ629WK-qeEAsNl_kuFJbeanth8wSJuqiZQUZwkyt-fgH7J7M7otWdnQZJAOJbDf_bHng0IW-PWmt_mrNlvCx28vYuyliNccWQP9w-zETx4gTOwtxdDaw/s940/misc%20FB%20blog.png" style="margin-left: 1em; margin-right: 1em; text-align: center;"><img border="0" data-original-height="788" data-original-width="940" height="536" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiZc3HakiMD8TSt6TlXlSlQCrw8JS_DlUIdf2p9g7QlOafh0ycj8WGu6NxtFKyxuGFYsFl1ZLZ629WK-qeEAsNl_kuFJbeanth8wSJuqiZQUZwkyt-fgH7J7M7otWdnQZJAOJbDf_bHng0IW-PWmt_mrNlvCx28vYuyliNccWQP9w-zETx4gTOwtxdDaw/w640-h536/misc%20FB%20blog.png" width="640" /></a></div><div style="text-align: center;"><br /></div><p></p><p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">I
always love having a good “aha!” moment, especially when it helps improve how I
manage my </span><span face=""Arial",sans-serif" style="font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-theme-font: major-fareast;">ALS
symptoms</span><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">. Better yet is when I learn that what I thought was a symptom
of </span><a href="https://alsnewstoday.com/what-is-als/"><span face=""Arial",sans-serif" style="color: #0a617c; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-theme-font: major-fareast;">ALS</span></a><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"> was
actually an impostor, the result of something called “learned nonuse.” Here’s
what happened.<o:p></o:p></span></p><div>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">As
I wrote in my column “</span><a href="https://alsandwellness.blogspot.com/2022/02/how-i-shift-into-als-manual-mode.html"><span face=""Arial",sans-serif" style="color: #0a617c; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-theme-font: major-fareast;">How I
Shift into ALS Manual Mode</span></a><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">,” when I sit in a chair and want to cross my
legs, I have to reach down with my hands to help lift one leg over the other.
“You have weak hip flexors,” the physical therapist at my </span><a href="https://www.als.org/local-support/certified-centers-clinics"><span face=""Arial",sans-serif" style="color: #0a617c; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-theme-font: major-fareast;">ALS
clinic</span></a><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;"> would tell me.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Hip
flexors are a group of muscles toward the front of the hip. They help move or
flex the leg and knee up toward the body, as you do when you march, step onto a
curb, or cross one leg over the other.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Why
were my hip flexors weak? Well, I thought it was just another part of having
ALS. But recently I read how patients with neurological conditions like mine
experience weakness in certain muscles that would normally be strong, simply
because these muscles aren’t being called into movement.<o:p></o:p></span></p>
<h3 style="margin: 12pt 0in; text-align: justify;"><b><span style="color: #212121; font-family: Aleo;">The slippery slope</span></b><span style="color: #212121; font-family: Aleo; font-size: 13.5pt; line-height: 107%; mso-bidi-font-family: "Times New Roman";"><o:p></o:p></span></h3>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Not
using these muscles becomes a habit, so the muscles further weaken and finally
atrophy to the point of not responding at all. That’s something I want to
prevent for as long as possible.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">It’s
important to know that this type of atrophy is different from what happens in
ALS from the death of motor neurons. </span><a href="https://www.sciencedirect.com/topics/psychology/learned-nonuse"><span face=""Arial",sans-serif" style="color: #0a617c; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-theme-font: major-fareast;">Learned
nonuse</span></a><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">, or disuse atrophy, is from a lack of voluntary movement; for
most of us, that happens because we’re </span><a href="https://alsandwellness.blogspot.com/2016/07/a-healthy-sit-als-fitness.html"><span face=""Arial",sans-serif" style="color: #0a617c; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-theme-font: major-fareast;">sedentary</span></a><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">. I’ll
have to admit, I certainly am, since ALS has severely weakened my feet and
lower legs.<o:p></o:p></span></p>
<h3 style="margin: 12pt 0in; text-align: justify;"><b><span style="color: #212121; font-family: Aleo;">My solution?</span></b><span style="color: #212121; font-family: Aleo; font-size: 13.5pt; line-height: 107%; mso-bidi-font-family: "Times New Roman";"><o:p></o:p></span></h3>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">I
decided to strengthen my hip flexors by following a strategy I used to
accomplish 40 chair squats — by being </span><a href="https://alsandwellness.blogspot.com/2020/02/the-power-of-just-one-chair-squat.html"><span face=""Arial",sans-serif" style="color: #0a617c; font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-theme-font: major-fareast;">willing
to do just one</span></a><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">While
sitting, I’d raise one knee up off the chair, lower it, and do the same with
the other knee. Mind you, I could only lift each knee about an inch. But I knew
that was OK. I did two lifts on each side in the morning and two again later in
the day. Every time I sat down, I’d do two sets of knee lifts. Soon I could do
five lifts, and my knees went higher, too.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Feeling
confident, I tried some knee lifts while standing with my rollator. This became
my new routine: standing knee lifts plus sitting knee lifts.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">The
other day I called my husband over to watch and showed off how I could perform
a seated knee lift so high my knee touched my outstretched elbow. He responded
with a “Wow, that’s great. Keep at it!”<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Crossing
my legs? That’s easy-peasy now.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Of
course, I can’t wait for my upcoming ALS clinic visit in March so I can
demonstrate my new skill to my physical therapist. For me, this was another
lesson in never assuming there’s no hope — and learning that you’ll never know if
you don’t try.<o:p></o:p></span></p>
<p style="text-align: justify;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Let’s
strive to live well while we </span><span face=""Arial",sans-serif" style="font-size: 11.5pt; mso-fareast-font-family: "Times New Roman"; mso-fareast-theme-font: major-fareast;">live with ALS</span><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">.<o:p></o:p></span></p><p style="text-align: center;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">----------------------------</span></p><p style="text-align: left;"><span face=""Arial",sans-serif" style="color: #212121; font-size: 11.5pt;">Want more motivation? I suggest: <a href="https://alsandwellness.blogspot.com/2022/05/how-i-use-showing-up-to-help-me-live.html" target="_blank">How I Use Showing Up to Help Me Live with ALS</a></span></p>
<p class="MsoNoSpacing"></p><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjP5kDp_T_28f9abmF3b15mJkSWiO939P--mp2Q_Paz3zeTsFYoJYeG0U95nckJtFvQbTwgKLe8c6Q5EOawCdl1mJA4IWTdpoeDwsPCFtDiDv19E66S02pQjhkvfXF1bNlCgP_GBCd-aeHqLq_73LgzjG1ETJ7jjh6L2Y8ft8guabHlsRXPpEY5Q2ReZg/s664/BB2.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjP5kDp_T_28f9abmF3b15mJkSWiO939P--mp2Q_Paz3zeTsFYoJYeG0U95nckJtFvQbTwgKLe8c6Q5EOawCdl1mJA4IWTdpoeDwsPCFtDiDv19E66S02pQjhkvfXF1bNlCgP_GBCd-aeHqLq_73LgzjG1ETJ7jjh6L2Y8ft8guabHlsRXPpEY5Q2ReZg/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS and Wellness Blog</td></tr></tbody></table><br /><p></p><p class="MsoNoSpacing" style="text-align: center;"><i><span style="font-family: times; font-size: large;">"One of the most common causes of failure is the habit
of quitting when one is overtaken by temporary defeat"</span><o:p></o:p></i></p><p class="MsoNoSpacing">
</p><h3 style="text-align: center;"><i><span style="font-family: times; font-size: medium;">Napolean</span></i></h3><p class="MsoNoSpacing"><i><br /></i></p><p class="MsoNoSpacing"><i><br /></i></p><p class="MsoNoSpacing"><i><br /></i></p><p class="MsoNoSpacing"><i><br /></i></p><p class="MsoNoSpacing"><i><br /></i></p><p class="MsoNoSpacing"><i>A version of this post first appeared as my
column on the </i><a href="https://alsnewstoday.com/" target="_blank"><i>ALS
News Today </i></a><i>website.<o:p></o:p></i></p></div><p><br /></p>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1650717271407428985.post-74415656363971212652023-05-16T17:45:00.002-07:002023-05-24T10:06:53.886-07:00How I Learned to Speak Up for ALS Awareness<p></p><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyhofVzKrhDP__CByuROzNFhBTOwqtesW2GbO-4bSeU1Pl9SWxwjYpmnH3GtQNMvyHUzmNmbkB3S_NDaZ36TNFDMm4Zc5ODbPIQRQnpGp56FF2A_6QbjrfF7yqQNh1BugiRDijOxXsd69QTbLqe8qsqJbNlLT3_30eOCTT5uaZhHQUMTtLhgbaVlR-tw/s940/misc%20FB%20blog.png" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="788" data-original-width="940" height="335" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjyhofVzKrhDP__CByuROzNFhBTOwqtesW2GbO-4bSeU1Pl9SWxwjYpmnH3GtQNMvyHUzmNmbkB3S_NDaZ36TNFDMm4Zc5ODbPIQRQnpGp56FF2A_6QbjrfF7yqQNh1BugiRDijOxXsd69QTbLqe8qsqJbNlLT3_30eOCTT5uaZhHQUMTtLhgbaVlR-tw/w400-h335/misc%20FB%20blog.png" width="400" /></a></div><br /> <span style="text-align: justify;">“I didn’t even know ALS existed until I was told I had it.”</span><p></p><p style="text-align: justify;"><o:p></o:p></p><div class="separator" style="clear: both;"><p style="text-align: justify;">That’s what most patients say when telling their ALS story. I said the same thing when asked to share my story at an event in 2010, and I hear the same thing from others today, 13 years later. The ALS community clearly needs to expand its awareness campaigns.<o:p></o:p></p><p style="text-align: justify;">Do you feel intimidated talking about yourself or your ALS, or perhaps you don’t know what to say about ALS? Then read on. I’ll tell you about my first experience sharing my ALS story, and share tips on how you can do it, too.<o:p></o:p></p><h3 style="text-align: justify;"><b>A reluctant story</b></h3><p><o:p></o:p></p><p style="text-align: justify;">A few months after my diagnosis, I was surprised by a phone call from my neurologist. Rather than having a medical conversation, she instead invited me to speak at a local ALS fundraising event.<o:p></o:p></p><p style="text-align: justify;">Although I’ve always been comfortable speaking to large groups about any number of wellness topics, sharing my personal ALS story with total strangers suddenly felt intimidating. My mind raced as I wondered exactly what my ALS story was. And if I told it, would I break down in a puddle of tears?<o:p></o:p></p><p style="text-align: justify;">My neurologist was waiting for an answer, and I knew I couldn’t back out. Reluctantly, I agreed to show up.<o:p></o:p></p><p style="text-align: justify;">Like many newly diagnosed ALS patients, I rode a roller coaster of emotions. I felt sorry for myself, wondering why there was no cure, and worried if my family and friends would pity me rather than support me.<o:p></o:p></p><p style="text-align: justify;">As it turns out, my experience at the fundraising event completely erased all of my earlier misgivings. I spoke from the heart, and in return, I felt the compassion in the room and the support surrounding me. My husband and I had a great time and happily joined in the cheers when the announcement came at the end of the evening that the event had reached its monetary goal.<o:p></o:p></p><p style="text-align: justify;">I’ve since gone on to speak at other ALS events, both online and in person. Besides knowing I’m doing my part to help others learn more about living with this disease, it also is cathartic. The more I write and talk about ALS, the more I accept having my ALS life.<o:p></o:p></p><h3 style="text-align: justify;"><b>My tips</b></h3><p><o:p></o:p></p><p style="text-align: justify;">What’s the best way to tell your ALS story? Well, don’t begin by recounting all the medical tests and exams that led to your <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>. Instead, I suggest you answer these three questions:<o:p></o:p></p><p style="margin-left: 0.5in; text-align: justify; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variation-settings: normal; line-height: normal;"> </span></span><!--[endif]-->How has ALS affected your life?<o:p></o:p></p><p style="margin-left: 0.5in; text-align: justify; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variation-settings: normal; line-height: normal;"> </span></span><!--[endif]-->How has the ALS community helped you?<o:p></o:p></p><p style="margin-left: 0.5in; text-align: justify; text-indent: -0.25in;"><!--[if !supportLists]--><span style="font-family: Symbol; font-size: 10pt; mso-bidi-font-family: Symbol; mso-bidi-font-size: 12.0pt; mso-fareast-font-family: Symbol;">·<span style="font-family: "Times New Roman"; font-feature-settings: normal; font-kerning: auto; font-optical-sizing: auto; font-size: 7pt; font-stretch: normal; font-variant-alternates: normal; font-variant-east-asian: normal; font-variant-numeric: normal; font-variation-settings: normal; line-height: normal;"> </span></span><!--[endif]-->Name something you wish more people understood about life with ALS?<o:p></o:p></p><p style="text-align: justify;">I know it’s hard to speak up and talk about a disease. It takes gumption to tell your story. But we need you. We need more and louder voices and bigger signs.<o:p></o:p></p><p style="text-align: justify;">Opportunities are everywhere, as simple conversations happen all the time. Just show up, join a Zoom call, or start a conversation about ALS with your friends and suggest a local awareness activity.<o:p></o:p></p><p style="text-align: justify;">The perfect time to begin is now because May is ALS Awareness Month.<o:p></o:p></p><p style="text-align: justify;">I have a few more tips and ideas for you in this post:<b><a href="https://alsandwellness.blogspot.com/2015/05/mayday-mayday.html" target="_blank"> Mayday! Mayday!</a></b><o:p></o:p></p><p style="text-align: justify;">...and the story behind this photo!<o:p></o:p></p><div class="separator" style="clear: both; text-align: justify;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC9DVVsZ9_YR_p1Nkcrc6Jw8XZcn1lgjQalesWFfPerV1lgfrHA_leQIJd1-EsNG_WXq1RP19ZPkORV9JoKsfo6Kkrd6GmorUOYBgE5u_Q1k0jcd4gtLOUXQavkRIrcuD66FlklESmjT2TmMSFY9vSqxQke_Bq4GS43PCJpttSqS5Nu2hkFBvJk5aL4g/s2560/Dagmar%20Inked%20for%20ALS.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="2560" data-original-width="1920" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhC9DVVsZ9_YR_p1Nkcrc6Jw8XZcn1lgjQalesWFfPerV1lgfrHA_leQIJd1-EsNG_WXq1RP19ZPkORV9JoKsfo6Kkrd6GmorUOYBgE5u_Q1k0jcd4gtLOUXQavkRIrcuD66FlklESmjT2TmMSFY9vSqxQke_Bq4GS43PCJpttSqS5Nu2hkFBvJk5aL4g/w150-h200/Dagmar%20Inked%20for%20ALS.jpg" width="150" /></a></div><div style="text-align: justify;"><br /></div><p style="text-align: justify;">Speak up! Help us live in a world without ALS.</p><p style="text-align: center;">---------------------------------------</p><p><o:p></o:p></p></div><table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWTGXAhp5bo6FsqrZaxTwulzMYlIF9YD1no42Vn6VoI49M6Q_eU5A-hhHRr3XGYCDWJOqP0qpfVDwfWC4Nk822U-4tX7I5Tu-Z7gazLBXcNkSQ4khS89tTUqhCARN71K8iDpYyNkzNYWQYGzyATNBBe7s5aXdL5On9V89ySNWfh4bbe38juzM8dVfJHg/s664/BB2.jpg" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="664" data-original-width="500" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWTGXAhp5bo6FsqrZaxTwulzMYlIF9YD1no42Vn6VoI49M6Q_eU5A-hhHRr3XGYCDWJOqP0qpfVDwfWC4Nk822U-4tX7I5Tu-Z7gazLBXcNkSQ4khS89tTUqhCARN71K8iDpYyNkzNYWQYGzyATNBBe7s5aXdL5On9V89ySNWfh4bbe38juzM8dVfJHg/w151-h200/BB2.jpg" width="151" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Dagmar Munn<br />ALS and Wellness Blog</td></tr></tbody></table><br /><p><br /></p><div style="text-align: center;"><i style="font-family: times; font-size: x-large;"> "Don't expect to make a difference unless you speak up for yourself"</i></div><p></p><p style="text-align: center;"><span style="font-family: times; font-size: medium;">Laurie Halse Anderson</span></p>Unknownnoreply@blogger.com0