Saturday, April 7, 2018
ALS and Wellness Blog
~ INDEX OF ARTICLES ~
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Meet Dagmar Munn
My Free Book
ALS Stress Management
ALS Speech (Dysarthria)
Living with ALS
All Learning to Live with ALS Posts
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Thank you for visiting my blog! I hope the information and personal stories I've shared here will help you on your own journey living with ALS. If you have any comments, questions or would like to see a particular topic covered please feel free to use the comment section below.
Tuesday, March 6, 2018
Announcing BIG NEWS for all ALS patients living with dysarthria – You can retrain your voice, learn to breathe better and -- keep on talking!
Thanks to the new innovative online course The Living Speech Series, developed by voice, speech and accent specialist, Andrea Caban. How do I know it works? Because I am enrolled in the course and so far, I am delighted with the results!
Dysarthria is the slurred, slow speech with a nasal tone and imprecise pronunciation of consonants that can occur in 80% of ALS patients.
It’s something I’ve been struggling with for the past three years. And like most other ALS patients with this symptom, I was told by my medical team that eventually I would lose the ability to speak and from that point on, assistive technology would speak for me.
Research has shown that of all the various ALS symptoms (that can include the loss of use of our arms and legs, loss of swallowing, muscle atrophy, and more) losing the ability to speak is frequently identified as the worst aspect of having the disease.
But now, I am learning how to -- keep on talking!
A Quick Background on the Living Speech Series
In 2015, an ALS patient with dysarthria sought help from Andrea Caban, head of Voice and Speech in the Department of Theatre Arts at California State University, Long Beach (CSULB). Although Caban was not familiar with ALS, she taught the patient several techniques traditionally used by actors for voice training. These techniques included breathwork, posture, pitch and https://vimeo.com/173663824.
Later In 2015, inspired by their success, Caban collaborated with that same ALS patient to create The Voice Bank,a one-woman show performed by Caban, sharing highlights of their voice sessions together and her patient’s fight to keep speaking.
Caban then created her online course and was invited by the Speech, Language Pathologists at UC Medical Center to participate in a clinical study using her methods with their patients.
Finally, this past January, I read a post on the ALS Association blog describing Caban’s performance and her course, which led me to write a column about Caban - - and thanks to the generosity of Andrea Caban, I am now enrolled in her four-week online course.
The Living Speech Series, consists of six instructional videos and a 15-page detailed study guide. The course costs $200.00*
You can download and/or print the study guide and the videos can be accessed repeatedly, as needed via a personal login code.
UPDATE:*Use the code BREATHINGWELL for $50 off the course through June 15, 2018.
(Please Note -- I am not an affiliate nor receiving any financial remuneration associated with this offer)
Sharing My Own Journey and Experiences
During Week 1, I learned to breathe more fully by retraining my diaphragm and my transverse abdominal muscle.
I also identified and released habitual tension from my body. For example, I became aware of my tendency for habitual breath-holding. Probably a result of the changes to my overall balance, strength and stability brought on by ALS. During simple movements I’d tense my stomach muscles and hold my breath. Now, when I push my rollator forward, I breathe through the movement. When I adjust my sitting posture and begin typing, I breathe through the movement. And so on. My breathing relaxed and deepened; it felt great!
For the next few weeks, I followed along with the videos; exploring making sounds and finding a new higher pitch for my voice. Even though the higher sound was comfortable and I discovered I could speak for longer periods of time without fatigue, I was a little worried about what others would think. To my surprise, no one seemed to mind and the best part was – I was being understood! Even talking on the phone (previously one of my biggest challenges) I was assured by those at the other end of the line that they understood me just fine!
I’m now in the mode of practice, practice, practice. Moving articulations forward in my mouth and testing out accents has been a challenge. I’m trying to undo how I’ve always pronounced words for the past 60+ years! But I am motivated! Slowly, my “K” sounds are crisper, my “-ing’s” are being heard and the higher pitch is feeling more normal. My new normal!
Confirmation at the ALS Clinic
Last week was my scheduled visit to the ALS Clinic and I was curious as to how my new voice and breathing would be accepted. Well, right away my spirometry score improved! 97%! Eight years ago I was at 101% and it’s been dropping steadily ever since. At my previous visit I managed 94% -- I know, I know, some patients would love that score, but I saw the trend of decline -- despite daily exercise. This time the test felt easy and I wasn’t exhausted from doing it.
While visiting with my Speech Language Pathologist, I learned that she was well aware of the techniques of using a higher pitch, moving articulations to the front of the mouth and using breath-from-the-belly when speaking. She even agreed that ALS patients should learn them, but thought many patients weren't motivated to try, so they weren’t routinely offered. However she did compliment me on my new higher pitch and even offered a few suggestions of her own for me to try. Of course, the minute I arrived home I promptly emailed her all of my information on Andrea Caban and her course!
Now it’s your turn; if you have dysarthria it is worth your time to look into how this program might help you. If you know someone who is struggling with this ALS symptom, please share this exciting news with them.
We can improve the quality of our lives and now, we can -- keep on talking!
*Use the code Use the code BREATHINGWELL for $50 off the course through June 15, 2018.
(Please Note -- I am not an affiliate nor receiving any financial remuneration associated with this offer)
Watch "The Voice Bank"
ALS and Wellness Blogger
"Among my most prized possessions
are words that I have never spoken."
Orson Rega Card
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Saturday, April 8, 2017
This post is adapted from my presentation at the "Ask the Experts" seminar
held on 4-8-2017 in Tucson, AZ, which was sponsored by the Arizona Chapter
of the ALS Association
Okay, Okay... I know, we ALL know, how to pay attention - - when we REALLY have to, that is.
Like right now, you're brain is focused on these words, curious and anticipating learning something new and interesting. But soon, what you're reading will spark a memory and you'll drift off for a few seconds, maybe minutes...or even longer. Suddenly you're going down that rabbit hole of just plain tuning out.
We get stuck in a loop of mindless mental chatter. Going through our days on autopilot. And we all know autopilot works - - sort of!
I remember I could coast a long time on autopilot - - easy-peezy! But soon after being diagnosed with ALS, I learned the hard way that even simple things like walking, drinking and eating … done without paying attention. Well, just weren’t safe anymore!
Why do we tune out? Our brains don’t like to pay attention to boring things. Even though you may be driving a car, running a sewing machine or cooking dinner - - all very important things - - your brain says, “I’ve done this a million times - - bor-rrrring!” - - and tunes ou; shifting your attention instead to all that “interesting” mindless chatter!
Think of it as, the part of our brain that loves to get immersed in a project - - be engaged, be in the flow, fully attuned and focused on what you’re doing right NOW - - gets pushed to the back - - and slouches. You could call it "bad posture of the mind."
The answer is to learn to be mindful; also called “in the moment.” It’s a feeling of awareness, calm and being attentive. It’s having a flexible state of mind and actively noticing new things around you.
You can learn to be mindful - - right now - - it’s simple and I’ll teach you how.
But since most beginners can only stay in the present moment for about 15 seconds or so, I'll also share how to get better at being mindful for longer periods of time.
Here’s the quick method - - called Active Mindfulness - - there's only 3 simple steps.
First - - you need to realize you were lost in thought or, “not here;” snap out of daydreaming. This usually happens when you wonder something like, “Why did I walk into this room?!”
Second - - immediately, in that split second - - notice 5 things that are around you.
Third - - continue to keep your brain curious & alert by continuing to notice, feel, even hear what’s around you. (Read my previous posts on Active Mindfulness -- Try this one for a more in-depth explanation- - for a shorter version - - check out this one).
To lengthen our brain’s attention span, to be able to focus for longer and longer periods of time, we’ll need to hit the gym. The mental gym that is!
And meditation is the perfect workout!
Spending only 10-minutes a day - - to sit quietly and focus on something simple like your breathing, or relaxing your shoulders or listening to nature - - will strengthen your brain’s focus for more difficult things like - - driving a car or reading long blog posts!
Many years ago, at my wellness center we taught the Mindfulness Stress Reduction Program developed by Jon Kabat-Zinn. Many of our students in this six-week intensive program had chronic health conditions and pain. Our results were so impressive that their private health insurers paid for the classes, in full! Jon Kabat-Zinn has led over 30 years of research on the health benefits of meditation. For instance, besides offering pain relief, meditation will also help you sleep better, support your immune system and help your brain process stress.
If you have never tried meditating, here is a link to a simple and easy 1-minute meditation. A quick search on YouTube will give you many more to choose from. Rather not watch YouTube? Then consider using one of the many free meditation apps (listed below) available for your phone or tablet.
YouTube link: https://youtu.be/0fcdv0kFVMs
Ellen Langer, PhD, has spent over 40 years studying mindfulness theory and she is the one who developed the technique of Active Mindfulness. Recently she turned her attention to the benefits of mindfulness for the elderly, those with chronic diseases, cancer and now to ALS.
In 2013, Dr. Langer received a grant from the ALS Association to study mindfulness and ALS. 197 subjects (pALS and their cALS) were taught how to use Active Mindfulness. The study included pre- and post- testing and the results were pretty impressive!
Link to full research article:
Dr. Langer is now developing short training videos for an online program so more pALS and cALS can learn mindfulness.
Are you still in the present moment? How do you know if you are? It’s easy, the secret is the “shift” - - when you notice you’re daydreaming - - then you’re no longer daydreaming!
As a person living with ALS, practicing mindfulness has helped me feel that I am in control, have more awareness and that I am moving safely. I’m also able to more fully enjoy the many experiences that come with each day.
I encourage everyone to take advantage of this easy to learn technique; mindfulness brings many health benefits and is something we all can do to improve the quality of our lives.
More on Active Mindfulness, Dr. Langer and her research:
Dr. Langer's website: http://langermindfulnessinstitute.com/
Books on Mindfulness: http://www.ellenlanger.com/books/
More on Meditation: (certainly not the only source, but a good place to begin your exploration)
Meditation research: http://meditation-research.org.uk/
Jon Kabat-Zinn website: https://www.mindfulnesscds.com/
Books on meditation: https://www.amazon.com/Jon-Kabat-Zinn/e/B000AQ12GA
Apps, Apps & More Apps!
I have tried out and enjoy using the app: Calm (https://www.calm.com/) and Stop, Breathe & Think (http://www.stopbreathethink.org/)
What are your favorite apps? Please share in the comment section below.
ALS and Wellness Blogger
"Wherever you go, there you are"
Sunday, February 12, 2017
Do you speak A-L-S-ky?
Of course, speaking A-L-S-ky was not on my bucket-list of new languages to learn during these - - my hazy, crazy, lazy retirement years. Actually, I was hoping for something more on the line of say, Italian.
But, A-L-S-ky it is, and as they say in Italy - - È quello che è (It is what it is).
My lessons in A-L-S-ky commenced about three years ago. That’s when my tongue began operating at half-speed. It’s actually a common and expected symptom of ALS. For example, I use a “bar-rush” for my hair,” ask for “a fawk and a sch-poon” at dinner and make sure that my “electric schk-ooter is fully chawged.” Obviously, I hear “I beg your pardon?!!” quite a bit now.
So, what’s the upside?
Don’t get me wrong, speaking fluent A-L-S-ky does have its benefits. Well, so far I’ve found only - - two:
Whenever we pull into the drive-through lane of our local fast-food establishment and encounter a squawking, mal-functioning speaker, I for some reason feel just like E.T.; who finally finds his lost alien companions; the squawking makes perfect sense to me! Just like a well-trained U.N. translator, I calmly relay the conversation back to my frustrated husband. “She SAID, do we want the order to-go, or to eat in the car?” Only what actually comes out of my mouth is, “Schee ZED, do we wand da orda to-go or to ead in da caa?”
You probably already can guess the limitations to that special skill!
The second and only other benefit to speaking A-L-S-ky involves telephone solicitors - - THEY now hang up on ME!
I remember one recent instance involving a fellow selling computer software; he apparently had reached the end of his rope for dealing with smart comebacks from irate folks rejecting his sales pitch. Dialing my number sealed his fate.
Me: “I’m verwy sawry but I have ALS and…“
He cut me off: “Ohhhhh, heh-woe is it? Well, I can play that game too! …HEH-WOE back to you, Missy! …Nyah, nyah, nyah!”
Click - - and then, he hung up!
Answering the phone in A-L-S-ky also helped limit my time spent on the phone with pollsters during our recent (and volatile) election season. Yup, they all hung up on me too.
…And the downside?
What I call A-L-S-ky, is officially known as dysarthria and defined as slurred, slow speech with a nasal tone and imprecise pronunciation of consonants. It occurs in 80% of all ALS patients. I figure, with 450,000 ALS patients currently worldwide, 80% makes it 360,000 of us - - almost a good-sized city - - all struggling with dysarthria!
Of all the various symptoms of ALS (that can include the loss of use of our arms and legs, loss of swallowing, muscle atrophy, and more) research has shown that losing the ability to speak is frequently identified as the worst aspect of having the disease. That’s because we humans take our ability to communicate for granted and losing it can erode the quality of our lives. We become mere spectators; socially isolated and as noted in my previous post, "How to Live a Balanced Life...", isolation leads to feelings of hopelessness, which in turn can bring on suicidal thoughts. So it’s vitally important that we continue to stay involved, connected and participating in life as much as is possible.
So, what are the options?
Like so many others who live with dysarthria, I’ve learned to compensate by adding in extra body language and facial expressions to help listeners understand what I’m trying to say. Short of forcing folks into an all-out game of Charades, I’ve also learned to edit what I say; reducing colorful explanations and in-depth opinions to simple concepts requiring fewer words. Often I feel as if stuck in in a badly captioned foreign-language film where on-screen we see mouths moving and much arm waving while down below the movie’s captioning simply reads: “Yes.”
In days of old, we’d have to carry around chalk and a chalkboard or paper and pen to scribble down questions and answers for others to read. Now we have APPS that transform a computer, tablet or smart-phone into a text-to-voice device. Just type out a word, hit the “play” tab and let the device do the talking. Hmmm, I wonder…aren’t we still just using a fancy version of the ‘old pen and paper?’
What about this new voice-activated technology? I’ve read it’s the wave of the future, soon to become the dominant way we interact with our devices. Seems the whole world is fed up with typing on keyboards and tapping on screens, “Just talk to it!” the ads urge. But what if we can’t talk? Or if we can, only A-L-S-ky comes out?
My phone’s “Voice Search” app is hopeless when it comes to understanding A-L-S-ky.
I ask: “Whads the bes Bah-Bee-Que wes-wrandt in Tooo-son?”
It answers with: “Here are your selections for - venice bars in Tulsa..."
Didn’t the folks on Star Trek have it all figured out?
Yes, Captain Kirk’s team had the Universal Translator; a hand-held device that translated alien spoken languages in real-time communication. And for us, the future has finally arrived!
Real-time translation technologies and software is popping up everywhere. Apps translate up to 90+ languages, Skype now offers real-time translations of eight languages (more to be added) and hand-held devices are emerging. Here’s a fun and impressive one developed by Logbar in Japan, that debuted just this year - - the “ili.” http://www.iamili.com/index.html
Now you’d think an enterprising inventor-entrepreneur would see the potential sales opportunity in 360,000 customers all speaking A-L-S-ky, all primed to purchase a hand-held real-time translator that recognized their particular language!
But wait - - News Flash! - - Soon to arrive is a new addition to our family home!
Alexa, is her name. Yup, we are joining the 4 percent of U.S. households who already have an artificial intelligence powered personal assistant. Although I’m disappointed to read it only knows one language - - English, I am heartened to read that it quickly learns its owner's voice inflections, especially owners who speak English with a heavy... foreign... accent!
I can’t wait for my own “First Contact” moment - - when with bated breath I say - - “Alexa… do you speak A-L-S-ky?
What happens next?
Read "Lessons Learned from Echo Show" for the conclusion to this story!
ALS ansWellness Blogger
"Only through communication can human life hold meaning."
Sunday, January 8, 2017
Have you seen those funny “Mannequin Challenge” videos that are making the rounds on the internet? In the videos people strike a pose as if they are statues frozen in time while a moving camera records the scene. The challenge is to pose in increasingly unusual locations, like a TV station, a gym or at a football game.
What’s ironic is that according to the Centers for Disease Control, 90% of Americans lead such sedentary lives that they could be re-classified as statues!
I have to admit I don’t really find “Mannequin Challenge” videos all that humorous. Because - - becoming stiff-as-a-statue is one of the real side-effects of ALS! For those of us living with the condition, being sedentary IS our new normal. Or, does have to be?
In my July post, A Healthy Sit, I shared three simple steps to improve how you sit, especially if you find yourself sitting most of the day. Now, let’s add some physical movement into the mix!
Experts are in agreement that long bouts of uninterrupted sitting have undesirable physical and emotional consequences. Studies show that sitting motionless reduces blood flow to the legs; increasing the risk for atherosclerosis and retention of fluids or swelling in the lower legs. Too much sitting also causes weight gain, osteoporosis, weakened muscles, as well as neck and back pain, lethargy and plain old foggy thinking.
Speaking of foggy thinking, the NEW news is of the beneficial relationship between exercise and brainpower. Exercise appears to help our brains resist physical shrinkage (brain size) along with enhancing our cognitive flexibility (thinking skills). And the best news for those of us whose health conditions create sedentary lives is that the exercise itself needn’t be exhausting to be effective for the brain. (How Exercise Could Lead to a Better Brain )
“Even a little bit of activity, spread throughout the day, is a practical, easy way to improve well-being,” says Jack Groppel, a founder of the Johnson & Johnson Human Performance Institute.
So, even though my own level of activity has slowed way down over the past six years that I’ve been living with ALS, I’ve found that several pre-planned moving breaks sprinkled throughout my day - - help to keep my energy up and my mind alert.
Moving breaks are easy - - but without a few important helpers in place - - they can be easy to forget to do! Let me share with you what I do and how to ensure your own success:
Begin by re-framing your thinking:
1. Instead of thinking exercise, think: moving. We’re simply making up for all the incidental exercise that comes from normal daily activities. If for example, someone else fixes all your meals, makes your bed, fetches the mail, waters the plants, etc., then you’re missing out on a lot of incidental exercise - - the simple physical movement that would have provided your body, muscles and bones with healthy activity and stimulation.
2. Instead of thinking I can’t, think: I can’t…yet. I realize that ALS symptoms are different for everyone; some of us use walkers, others wheelchairs. For some, legs don’t move well, for others its arms. So, for your moving breaks I will have several options you can pick from.
Let’s begin with your first moving break - - right now!
· Slide your hips forward to the front edge of your chair. Sit up as tall as you can.
· Look up. Look side to side and all the way behind.
· Let upper back touch your chair back, sit up tall again, drop back, sit tall.
· Reach arms up and pretend to climb a rope; hand-over-hand.
· Stretch legs forward and flutter kick feet.
· To finish, return to a healthy sitting position.
Want a little longer moving break? Try this one:
Bookmark this post so you can take one more moving break later today.
I want to help you become successful at taking several moving breaks daily! So, in my next several posts I'll include more videos, tips and ideas on how to move.
Until then, YOU have a homework assignment! To select and set up your tracking method.
One of the best ways to begin and continue with a new habit is by tracking your progress. For years, our only option was writing everything down and I always relied on small spiral notebooks. But now we have Apps! No more need to put pencil to paper; they’re convenient, can be customized to your needs and there are many to choose from. Here are two that I’ve used and like:
“Habitica makes self-improvement a fun game in which the player collects items such as gold and armor to become more powerful. Rewards are achieved through maintaining real-life goals, in the form of Habits, Dailies and To-Dos.” Free
Loop Habit Tracker: http://loophabits.org/faq.html
“Create and maintain good habits and achieve your long-term goals. Detailed graphs and statistics show you how your habits improved over time.” Free
Check them out or use another a tracking app that appeals to you. Download and set up your tracker to list two moving breaks every day. Now, every time you take a moving break - - check it off in your App.
We’re on our way to moving!
Direct link to reference: http://www.nytimes.com/2012/04/22/magazine/how-exercise-could-lead-to-a-better-brain.html)
ALS and Wellness Blogger
Tomorrow you will have wished you had started today!
Email recipients: Use this link for internet version.
Thursday, December 15, 2016
I am proud to announce that my ALS and Wellness Blog tied for 1st Place
in Healthline.com’s Annual Best Health Blog Contest!
I extend my heartfelt thanks to YOU my voters.
TOGETHER we made it happen!
And in gratitude, I have a personal message from me to you:
We all thank Healthline, for sponsoring the contest
and providing the $1,000 prize
which I will donate to the ALSAssociation.
So, thank you again to all my friends both near and far!
ALS and Wellness Blogger
"There's no greater strength than working in unity. Amazing things can be achieved when you're part of a team."
Email recipients: Use this link to read website version.
Monday, November 21, 2016
My ALS and Wellness Blog has been nominated for Healthline’s 2016 Best Blog Contest - - and I need your vote to win!
The contest runs November 21st through December 12th, 2016, and since you can vote once every 24-hours - - your repeat votes count. It’s super-easy to vote (my instructions are below).
Together we can raise awareness for ALS (Amyotrophic Lateral Sclerosis also known as Lou Gehrig’s disease) - - please share this post and encourage others to vote as well. Together we can WIN - - 1st place is a $1,000 prize which I will donate to the ALS Association.
Thank you for voting!
** Are you a new reader to my blog? Use the handy list of titles on the right to read any of my past posts. Or, here is one I suggest, filled with lots of ALS humor!
1. Click on this link: http://www.healthline.com/health/best-health-blogs-contest
2. Once the page fully loads, scroll toward the bottom SEARCH BOX and type in ALS
3. "ALS and Wellness Blog" should appear. Enter your email and click “VOTE”
4. The page will turn grey and at the top will be a box asking you to confirm you are not a robot.
5. You will be returned to the voting page:
- First time voters: click “send a confirmation email.” IMPORTANT: Your vote will added to our total once you click confirm this message on YOUR email site.
- Repeat voters: the purple "Vote" box will have a check-mark. Success!
Then do it once again EVERY 24-hours!
Why Do We Need to Raise Awareness of ALS?
ALS was first discovered in 1869 by French neurologist Jean-Martin Charcot, but most folks hadn’t even heard of the disease until the 2014 “ALS Ice Bucket Challenge.
ALS strikes the healthy and fit as well as those that aren’t.
ALS is seen equally among men and women, with the average age of onset at 40-60 years old.
ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.
ALS used to be considered a rare disease. Now the lifetime risk of acquiring ALS is 1 in 400, a number that is similar to the incidence of multiple sclerosis.
Every day an average of 15 people are newly diagnosed with ALS — more than 5,600 people per year. The number worldwide is estimated at around 450,000.
ALS and Wellness Blogger
I believe ALS is fully curable...it's just under-funded!
Email recipients: Use this link to read blog on web.