I Treat My ALS Clinic Like an Olympic Challenge

Dagmar Munn avatar

by Dagmar Munn |

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Cue the heroic Olympic theme song, our competitor is ready to begin!

As the timekeeper signals all onlookers to be silent, the athlete draws in a deep breath, then while slowly exhaling, counts out loud from one to 10. She successfully completes the task using just that single breath of air, causing the onlookers to cheer “Hurrah!”

But this event isn’t being held in a grand arena. Rather, it’s being conducted in a small patient exam room being used for today’s ALS clinic.

I am the competitor, and the onlookers are my doctor, speech therapist, and husband.

Imagining that my ALS clinic is a mini-Olympic competition is one of the many mind games I create to help me cope with my ALS. Let me tell you why, and how this helps me, and perhaps it can help you, too.

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Why use an ALS clinic?

ALS clinics are an efficient way to provide care for an ALS patient. In my case, in a span of three hours, I see my neurologist, speech therapist, physical therapist, respiratory therapist, dietitian, and sometimes more. And the best part is I stay in the same room while they all come to me!

But even though I go with a positive attitude, ask questions, and receive good advice, after 11 years of attending these clinics, I realize there’s only so much advice everyone can give me. So, rather than let the whole experience become a disappointment, I’ve decided to turn it around.

I thought why not take advantage of having all those clinicians and their testing equipment in one room? Why not use them to help validate my at-home exercise and practice sessions? This way, every few months, I can see if I’m maintaining my “routines,” or if I need to tweak them.

How I ‘train’

Most ALS patients come to know all too well the various tests conducted at their own clinics. At mine, these include assessing muscle strength by pushing against resistance and testing my ability to pull. There are also measurements of my ability to speak clearly, cough, and breathe deeply. I finish up in the hallway outside the exam room to demonstrate how I can safely walk with my rollator.

At home, although I follow a well-rounded gentle exercise plan, I’ll admit to adding in a few extras to help me train to the test.

For example, knee pushups done on our bed mattress help me keep my arm strength. Over the years, I’ve been able to increase from a shaky one to a daily count of eight.

Then there are my breathing and speaking regimens, from blowing bubbles to joining various online voice studies. Instead of walking in circles through the house, I step onto my rebounder and walk in place to peppy music.

What about the tough times?

Sure, there are times when my ALS symptoms cause a low score at the ALS clinic. Just like the Olympic and Paralympic athletes, I experience challenges and setbacks. But that’s when I draw inspiration and strength from their dedication to a goal. I adjust my attitude, tweak my plan, and start all over again.

And I remind myself that I’ve already proved that progress can be made one step at a time by being willing to “do just one.”

My mini-Olympic ALS clinic is a lesson in visualization, which entails using my imagination to picture the challenges ahead and to see a positive situation. It’s what top athletes do to focus before a competition, and what I do to help me each and every day.

Join my team! Together we can learn to live well while we live with ALS.

***

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Comments

Kathy Resnick avatar

Kathy Resnick

Dagmar,
I like your philosophy. I know that when I am having emotional and mental issues coping with ALS, physical activity/therapy is my best medicine. I start with 1 rep and try to add another, striving to get to 5. I focus on good form and breathing for each rep. Sometimes it may be ugly…however my goal is to be in the moment, being the best me. The portion of my exercising I enjoy the most is stretching; which is beneficial for balance and range of motion.

Reply
Dagmar Munn avatar

Dagmar Munn

Kathy, you are doing exactly what I am doing! Hurrah!

For more ideas and tips, check out my posts on exercise: https://alsandwellness.blogspot.com/2017/09/als-and-wellness-blog-archives.html

David Crellin avatar

David Crellin

I love the analogy. I climb the stairs every evening imagining I'm climbing an ice face, finding tiny handholds, bracing against a wall. I half- joked last night that I'll get my climbing harness, belay device and rope out.

My ALS clinic experience mirrors yours, although my consultant sits at his desk rather than coming to where I am. That speaks volumes! My visit to SITraNS in Sheffield, UK to see Prof Dame Pamela Shaw was refreshingly different: a cup of tea as she came to meet me and lead me back to her office & examination suite. Then catching up on old times: she studied medicine with my sister & husband, so lots of shared memories. Then ALS business & inviting me onto a clinical trial. A very refreshing change.

Reply
Dagmar Munn avatar

Dagmar Munn

Thank you for sharing your clinic with us David. It sounds like you have a positive medical team!

JACKIE avatar

JACKIE

Deat Dagmar
I enjoy your posts. I am still waiting for my final diagnosis even though I can't swallow part of time. Not until the end of August is my appointment.
It's sad. Modern medicine requires
Me to maybe choke and die waiting.
Meanwhile fri I jump in a rented RV to visit the grand canyon . Hope it cheers me up !
Sincerely, Jackie RN from SD

Reply
Dagmar Munn avatar

Dagmar Munn

Jackie, I hope you have a wonderful trip. We too, visited the Grand Canyon (South Rim) shortly after I was diagnosed - - and it has been a great memory ever since.

Perhaps this post I wrote about swallowing will be of help to you: https://alsandwellness.blogspot.com/2020/02/when-swallowing-becomes-als-issue.html

Carol Law avatar

Carol Law

I too had ALS Clinic this week. Saw 3 therapists, dietician, 2 MDs; all came to me over 3 hours. Physical Medicine physician was on vacation and I couldn't get lungs test cuz was too soon after my 2nd vaccine. Long story re delay in getting that.. .

Reply
Marge mitchell avatar

Marge mitchell

I love reading these ALS POSTS...I, too, am waiting for a diagnosis..I saw my neurologist on June 1st, had an EMG on June 23rd...my only problems are trouble walking, talking and weakness in my muscles. I grab my walker and walk 5000+ steps each day. I'm keeping positive

Reply
Dagmar Munn avatar

Dagmar Munn

High-five with you, Marge!

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