Sunday, February 12, 2017

Do YOU Speak A-L-S-ky? (ALS Humor)

Image: Hotblack1

Do you speak A-L-S-ky?

I do.

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 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?!!” a lot 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: “Heh-woe?”
He: (silence….)
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 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…aren’t we still using just 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?
Tune in next week (or check my future blog posts) for the conclusion to this story!

DagmarMunn
ALS ansWellness Blogger



"Only through communication can human life hold meaning."
Paulo Freire








Sunday, January 8, 2017

Moving Matters! (ALS Exercise Tips)


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:



Congratulations!
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!





Dagmar Munn
ALS and Wellness Blogger





Tomorrow you will have wished you had started today!
Murray Newlands





Email recipients: Use this link for internet version.

Thursday, December 15, 2016

ALS and Wellness Voted Best Health Blog 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! 
Dagmar Munn
-----------------------------------------

Click Here for Healthline's recent interview with me about my blog.
"Meet Dagmar Munn"

------------------------------------------

UPDATE: January 25, 2017




Dagmar Munn
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."
Murray Newlands




Email recipients: Use this link to read website version.

Monday, November 21, 2016

Dagmar’s ALS Challenge: No buckets of ice & no videos - - Just your VOTE!



Exciting news!

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!


Instructions:
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!

Again, 
Thank you!


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. 
Dagmar Munn
ALS and Wellness Blogger 






I believe ALS is fully curable...it's just under-funded!





Friday, November 18, 2016

ALS Wellness Life Dimensions Model: How You Can Live a Balanced Life While Living with ALS (Part 1)


Image: Rita Amador

(The following was a Power Point presentation I created for the
2016 ALS Association Clinical Care Conference held in San Diego,
Nov. 2-4, 2016. It was modified as a 3-part post in order
to share it with my ALS and Wellness Blog readers)

Part 1

Fortunately, most of my life experiences did not include hardship or adversity. Oh sure, I faced various challenges along the way, but nothing equal to that of being diagnosed with ALS!

I’ve been a lifelong health and fitness enthusiast, culminating with 25 years managing a hospital-based wellness program in Iowa - - which included teaching wellness to individuals living chronic illness' as well as a guest speaker for their various medical support groups.

Having the diagnosis of ALS, put me on the other side; facing adversity, searching for my own answers and - - needing help.

But by 'year two' of having ALS, and with encouragement and input from the Tucson ALS Clinic team members and the Arizona ALS Association, I wrote a self-help eBook for others who like me were living with ALS. I used a series of humorous anecdotes to describe my first year with the disease; documenting my emotional transition from initial shock and sadness to finally feeling balanced and optimistic.

The book received positive attention worldwide and led me to create and author ALS and Wellness, an online blog that continues to share more examples of ALS-related wellness motivation, inspiration and humor. I joined several ALS Facebook groups, tweeted and read other’s blogs and personal stories.

But it wasn’t until I was well into my sixth year of living with ALS that I attended my very first ALS support group meeting. Eager to make new acquaintances, I looked forward to sharing news about my eBook and Blog as well as learning what others were doing. The meeting began with each person stating their name and telling everyone a bit about themselves.

A woman sitting near me began with, “Hello everyone, my name is “- - - -. “ Then matter-of-factly, she continued with; “I’ve had ALS for three years now and……… I’m waiting to die.”

The room fell silent - - but only for a few moments; introductions carried on; no one commented, acknowledged or seemed shocked in any way at her announcement.

Three months later I received word that this poor woman had indeed passed away.

I was stunned.

Image: DodgertonSkillhause 

That experience launched my new quest to learn more about why those of us with ALS all have such different outlooks and how I can help others find their emotional balance while living with ALS.  

The emotional impact of ALS on patients including their caregivers, family and friends is immense. While no two journeys with ALS are alike we can learn valuable lessons from those who have found balance and continue to live full lives while managing their decline in physical function.

Many factors influence length of survival and quality of life for someone with ALS. But only one factor exists that you, the patient can have a direct influence over - - Your own psychological well-being.

For some a positive state of mind is easily mastered. For others, the struggle feels endless.   

Studies show that for the person with ALS, contending with the steady loss of physical function most often leads to less socialization and increased isolation. In addition, the growing feelings of loss of control and having lost meaning for one’s life give rise to the state of abject hopelessness.  

Studies also show that experiencing a lack of meaning in life is a predictor of hopelessness and for patients with ALS; hopelessness is a strong predictor of suicidal thoughts 4,5 

Until only recently, the assumption was, “If a person has ALS, then he/she must be depressed and have a low quality of life.” 2


But we continue to see many patients who accept their diagnosis and seem to effortlessly “move on” with their lives. They “find a way,” adopt a personal mission and not only continue to participate in family and social events; many join fund raising and awareness campaigns as well. Others travel, join sporting events and remain noticeably positive, optimistic and hopeful.

Their challenging life crisis is faced with resilience and a changed sense of priorities. They transition through adversity, cope with and survive change.

Yet both groups share the very same diagnosis - - that of having ALS!

Can these resilient behaviors be adopted by others?

I believe they can and will share with you exactly how, through the use of the ALS Life Dimensions Model. Using it has helped me immensely and I believe it can be a valuable tool for you as well. Something you can use to support specific behaviors to improve your mental well-being and quality of life.


When I analyzed the past six years of my own life with ALS, I noticed a familiar pattern emerging. Without having a conscious intent to do so, I was following the very same principles of wellness I had taught to others those many years ago. These included various stress management techniques and the Six Dimensional Model of Wellness developed in the 1970s by Dr. Bill Hettler, University of Wisconsin at Stevens Point and co-founder of the Wellness Institute.

His model represents elements and behaviors by which anyone can create their own pathway to optimal living. Today his theory continues to be taught to health students, is used in professional settings and is widely regarded a defining theory for the term “wellness.”

The six dimensions of wellness are: Occupational, Physical, Social, Intellectual, Spiritual and Emotional.

Even though current trends in our ‘body conscious’ society encourage us to equate optimal health with diet, exercise and looking young, Dr. Hettler’s model shows us that high level wellness or optimal living can be achieved even by those considered “unwell;” especially when judged on their age or life condition.                                                                                                                                                    
Since those early days in the 70s, when Dr. Hettler first introduced his model, subsequent wellness programs modified it a bit by adding more dimensions such as: the environment and civil responsibility.  But when asked as to which wellness model is the best, Dr. Hettler simply replied, “The one you use.” So, I knew that I could adapt it for my current needs as well.  

I was using five dimensions: Physical, Emotional, Mental, Social and Spiritual. Why five? These were the areas that I found myself repeatedly addressing and reassessing during each of these past six years. Here is the model I created: 
Let’s pause for a moment and look at just one more important model.  This one will help put all the pieces together. Published in 2015, it represents a thematic synthesis of 29 studies covering 342 individuals with ALS in which researchers identified two pathways, or ‘emotional choices’ made by ALS patients when experiencing loss. It might seem a little "busy" at first, but take your time to look it over - - following the pathway or loop on the right side, then the one on the left. 

The two loops show how patient choices led to either enabling feelings of hope and coping or, disabling those same feelings. 

Responses that disabled hope and coping were:

·         Disengaging from roles, activities and interactions and,
·         Having periods of greater dependency on others and increased isolation.

This in turn led to greater periods of succumbing and as the patients continued to experience on-going changes or loss, they finally gave in to hopelessness. As I mentioned earlier, hopelessness is a strong predictor of suicidal thoughts. 4,5,6,7

That’s not very uplifting news and certainly not new news to those of us living with the disease!

Let’s look instead at what enabled sense of hope and coping. These responses included:

•             Challenging the loss or problem by reappraisal.
•             Accepting the loss or problem without resigning to it.
•             Focusing on what could be done to aid the situation.
•             Retaining control, autonomy or agency.
•             Relying on supportive relationships.
•             The proactive use of functional and technological aides.

"But wait," you might be thinking,“Those behaviors are easier said than done!”   

That’s where my ALS Life Dimensions Model comes in and the three-step process that helps us learn how to choose and implement enabling behaviors along with building stronger coping strategies. All of which will help you face each ALS-related change in your life with more confidence and emotional strength.

The Enabling Model will be our road map that guides us and our ALS Dimensions Model will be the method we use to move from one stage to the next.

--------------------------


I look forward to your feedback and comments - - as well as your success stories!

 
Dagmar Munn
ALS and Wellness Blogger












References

1.     Cure – A Journey into the Science of Mind Over Body, Marchant, Jo. PhD., Crown Publishers; 1 edition (January 19, 2016)

2.     Rabkin, Judith G., Albert, Steven M., Rowland, Lewis P. and Mitsumoto, Hiroshi. (2009) How Common is Depression Among ALS Caregivers? A Longitudinal Study. Amyotroph Lateral Scler. 2009 Oct–Dec; 10(5-6): 448–455. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2888701/

3.    Soundy A. and Condon N. (2015) Patients experiences of Maintaining Mental Well-being and Hope within Motor Neuron Disease: a Thematic Synthesis” Front Psychol. 6:606.dol:10.3389/fpsycg. 2015.00606 4

4.    Plahuta, J.M., McCulloch, B.J., Kasarskis, E.J., Ross, M.A., Walter, R.A., and McDonald, E.R. (2002). Amyotrophic Lateral Sclerosis and Hopelessness: Psychosocial Factors. Soc. Sci. Med. 5,2131–2140.doi:10.1016/S0277-9536(01)00356-2

5.    Blackhall, 2012). Blackhall, L.J. (2012).Amyotrophic Lateral Sclerosis and Palliative Care: Where We Are, and the Road Ahead. Muscle Nerve 45,311–318.doi:10.1002/mus.22305

6.    Averill, A.J., Kasarskis, E.J., and Segerstrom, S.C. (2007). Psychological Health in Patients with Amyotrophic Lateral Sclerosis. Amyotroph.Lateral Scler. 8, 243–254.doi:10.1080/17482960701374643

7.    McLeod, J.E., and Clarke, D.M. (2007). A Review of Psychosocial Aspects of Motor Neurone Disease. J.Neurol.Sci. 258,4–10.doi:10.1016/j.jns.2007.03.001

8.   The Six Dimensions of Wellness - - The National Wellness Institute

9.   Pagnini, Francesco and Castelnuvo, Glanluca. Psychological Issues in Amyotrophic Lateral Sclerosis. Frontiers in
      Psychology. February, 2016. ISSN 1664-8714, ISBN 978-2-88919-758-3, DOI 10.3389/978-2-88919-758-3


Acknowledgements

Thank you!
                                University of Arizona ALS Clinic at Banner UMC
                                Katalin Scherer, MD
                                Holli A. Horak, MD
                                Donna McArthur, PhD, APRN, BC, FAANP                                                  
                                ALS Association of Arizona


Sunday, November 13, 2016

Just Three Steps: How to Live a Balanced Life While Living with ALS (Part 2)

Maybe your life was humming along just fine "Before ALS” - -  I know mine was. And sure, perhaps the way we reacted to Life’s many stressors might not have been all that perfect ...but we got by.

But let’s be honest. Living with ALS; 24 hours a day, 7 days a week and dealing with the accumulating challenges and changes plus, trying to keep up with family schedules and other obligations can wear a person down! Seems our old reliable coping styles are in need of assistance!

That's where the ALS Wellness Life Dimensions model comes in. It's a simple daily method that has been of tremendous help to me these past six years I've been living with ALS.

First, some truths:

1.) Recent research* shows that adopting resilient behaviors and attitudes will improve your well-being, health, comfort and happiness. 2.) You alone control your mental and emotional states. 3.) And our bridge to crossover from the land of dry research and statistics into real-world applications and quality of life is by way of the ALS Life Dimensions Model.

Let’s get started!


Physical – Emotional – Intellectual – Social - Spiritual

These five dimensions are essential for living a balanced, happy life. But, they can slowly diminish when for example, we restrict our daily activities, reduce our circle of friends, have more of our health decisions made without our input and begin losing our sense of value as a person.

We can however keep our Life Dimensions balanced and full through behaviors that include: taking responsibility for our emotional feelings, challenging our illness and accepting problems without resigning into them, relying on supportive relationships and controlling the controllable aspects of our life.

In general, the five different dimensions are inter-connected and even though we may at times need to focus more on one over another, together they hold equal status in our overall well-being. As soon as we become aware of an over-emphasis on one dimension, we check-in with the remaining dimensions and explore ways to make adjustments or increases in each. A change in one dimension will have an effect on several other dimensions.

For instance, losing the ability to walk or drive a car may affect social activities and self-esteem. Using an electric wheel-chair or arranging for shared transportation can be solutions that allow for continued social activities and improved self-esteem.

How do keep our Life Dimensions in balance or correct them if we sense they’ve shifted? By following a simple three-step process:

ASSESS – RE FRAME – BALANCE


The diagram below show entire process: We begin on the left - - Life Dimensions in balance. If, we experience a change (or loss) we then begin the three-step process of ASSESS-RE FRAME-BALANCE with the goal of bringing our Life Dimensions back into balance again. 


>>> Step 1 - ASSESS the situation.

Ask yourself what has changed (lost). Try to be as specific as possible.

Then, ask yourself how you feel about the identified change or loss. Your goal is to be in a state of mind where you accept the change/loss. 

If you can't quite accept it yet (feelings of anger, denial, sadness, etc.) then read Part 4 Lifelines (post coming soon) for a list of techniques that I've used to process and accept change.

>>>Step 2 – RE FRAME the change (or loss) into a challenge.

This requires a mental shift or reappraisal of your situation from a different perspective from where you are now. (Read this post to learn how)

For example, with a loss of the ability to walk make a list with two columns: named "A" and "B." Under "A" list all the places and locations you need access to (example: across the house, in the grocery store) Then, Under "B" identify what could be used to get you from A-to-B. Such as, to move across the house: a walker. In the grocery store: a store provided electric cart, and so on.  As you brainstorm enlist the help of others for ideas, possible solutions and how to bring solutions into reality.


>>>Step 3 – BALANCE your Life Dimensions.

Review the Life Dimensions definitions. As you read through each one take time to reflect how your life matches the statement  If something is not in agreement, apply the ASSESS-RE FRAME-BALANCE process once again.

Physical Life Dimension
• Our body’s physical health, its level of function, and the physical changes
   brought on by disease progression. 
• Our proactive use of medical equipment, appliances and medication.
• Our intake of quality nutrition, practice of regular therapeutic exercise,
   quality sleep and regular daily physical activity. 

Emotional Life Dimension
• Our ability to cope with change and accept the disease we live with. 
• Our contentment and happiness. 
• Our ability to express stress appropriately and effectively.
• We are coping day by day and living in the present moment.

Intellectual Life Dimension
• Our creativity, curiosity and pursuit of learning experiences.
• We share our intellect and mental gifts with others.
• We pursue personal interests while keeping a world-view. 

Social Life Dimension
• Our interpersonal (family, caregivers, friends) relationships remain strong.
• We remain connected with our community.
• We use appropriate methods of communication to continue
   to engage with others.

Spiritual Life Dimension
• We have meaning and purpose for our life.
• We continue to participate in service to others.
• Our actions are consistent with our beliefs and values.
• We are content with our spiritual beliefs.

Are you ready to begin? It's really not that difficult once you get used to the process and this method can quickly become your new healthy daily habit. I find that whenever I notice I'm beginning to feel ‘down’ or stressed, I check–in with my feelings and mentally visualize the five dimensions. Then I'm able to assess the cause and can figure out what I need to do for re-balance. Overall the process helps me feel more in control and more relaxed throughout my day.



I look forward to your feedback and comments - - as well as your success stories!


---------------------------- 

* References:
Soundy A. and Condon N. (2015) Patients experiences of Maintaining Mental Well-being and Hope within Motor Neuron
Disease: a Thematic Synthesis” Front Psychol. 6:606.dol:10.3389/fpsycg. 2015.00606 4


Dagmar Munn
ALS and Wellness Blogger




"This disease wanted to monopolize my attention, but as much as possible, I would focus on my life instead."
Winifred Gallagher Rapt, author
Rapt: Attention and the Focused Life

Friday, November 4, 2016

Re-Framing: How to Live a Balanced Life While Living with ALS (Part 3)

Image: cheriedurbin

In PART 1 and PART 2 of the ALS Life Dimension Model we learned that despite having ALS, you can impact and improve the quality of your life by adopting resilient attitudes and behaviors. This continuation blog post takes us through two examples of using the three-step process:

1.       Assess what has changed and your feelings about that change.
2.       Re-frame the change into a challenge.
3.       Balance and re-balance each life dimension.

First, an example from my own life:

Ever since moving to Arizona I always looked forward to the first Tuesday of each month! - - That’s when a group I belong to holds its monthly meetings. Our membership is made up of local fiber artists and crafters. For me, the monthly topics are so interesting and the members so enthusiastic that I always leave in high spirits and feeling completely rejuvenated.

Even as my ALS symptoms increased I remained an active member; serving as vice-president, and teaching several workshops. But last year, with the onset of dysarthria (the loss of effective control of my voice) I thought my days with the group were over for good.

What changed?  My ability to communicate and connect with others.

My feelings?  They engulfed me: I felt angry, sad, worried, dejected and more! But, I took the time to examine each feeling; testing against logic and reality. For instance, I worried that my slow speech would cause others to assume my mental abilities were slow as well. I imagined ‘worst-case’ scenarios that had me at the meetings but sitting all alone in the back of the room and eventually dropping out of the group altogether.  Both imaginings were of course, false. Nobody would think I’ve suddenly lost my ‘marbles’ and these are not the kind of folks who would shun me for having a disability.  

It took courage, but one by one I faced each fear while keeping myself grounded in the ‘present moment.’

How did I re-frame?  When the position of writing the group’s monthly online newsletter became available - - I volunteered! It was a perfect fit that allowed me to continue to participate, to contribute by way of my computer skills and the job didn’t rely directly on oral communication.

Yes, it was a huge learning curve, but a fun and challenging one. I have the freedom to add creativity and special effects to each newsletter and the positive comments that come from members enhance my sense of value as a person.

And - - I continue to look forward to the first Tuesday of the month and sharing, learning and laughing among supportive friends!

My experience in terms of the ALS Wellness Dimensions Model would look like this:




My second example is of an experience we all share - - our diagnosis.

What changed?  Too often, patients and their family members have had bad experiences surrounding the moment they received the diagnosis of ALS. They may have heard, “I’m sorry you have ALS/MND. This is a fatal disease for which there is no cure. Most patients live from two to four years. Go home and get your papers in order.”

Maybe their physician did deliver the diagnosis with compassion and even offered support BUT upon arriving home, “Dr. Google” was consulted.  Days and weeks were spent scouring the Internet; reading gloom and doom articles about the disease, rants against the medical system and of the tempting bogus treatments found on unscrupulous web sites.

Our feelings?  We all share the psychic ‘trauma’ of the diagnosis; of learning that our lives have changed forever. A trauma that can send some of us into the stress responses: flight, fight or freeze. Anger, denial, sadness, fear are all valid emotional responses - - but unhealthy emotions to hold onto for the months and years ahead.

How to re-frame?  We can take advantage of our brain’s neuroplasticity - - our brain’s ability to reorganize itself to recover, relearn and even reverse specific thinking patterns - - to re-frame a new more positive memory of our diagnosis.

This one, offered by the very helpful international non-profit organization, ALS Worldwide can become your new template. 

"You have a serious neurological disease called Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s Disease and Motor Neurone Disease.  We don’t yet know the cause of this disease, but it affects the voluntary muscles of the body. Your voice is slurry and your legs are not as strong as they once were. But we can give you medications and supports that can help minimize the symptoms.  There’s a lot you can do to help yourself.  Exercise and nutrition help maintain muscle strength.  Some new medications will help your speech and mood. With our excellent support staff and therapists to assist you, there is reason to be encouraged.  Together we can help you live a full, productive life and maintain a sense of hope for your future." http://alsworldwide.org/care-and-support/article/a-new-kind-of-diagnosis

I suggest you save it and read it once a day until this becomes your new memory, your new ‘personal story’ of your diagnosis - - One that will allow you to re-balance your life dimensions and move forward; to focus on your Life, not on your disease.

I look forward to your feedback and comments - - as well as your success stories!


Dagmar Munn
ALS and Wellness Blogger



“If you change the way you look at things, the things you look at change.”
Dr. Wayne Dyer







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