When things go right: My week living with ALS

Cataloging the positives in a set period of time can benefit our well-being

Dagmar Munn avatar

by Dagmar Munn |

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Last week was good; nothing bad happened to me. Not that I was expecting bad things to happen, but as someone who lives with ALS, I feel pretty darn successful whenever I can look back and note that things went well.

I know, I know: Writing about a calm, boring, nothing-bad-happened week is not the norm. The traditional advice about writing a column like mine recommends that I first identify a problem and then offer tips on how to solve it. Through the years, I’ve tackled many ALS-related problems, such as navigating badly designed accessible restrooms, dealing with others who don’t understand what ALS is, and strategizing to cope with challenging days.

But last week, rather than noticing what was going wrong, I decided instead to pay attention to what was going right. And something went right: My gluteus medius muscle, directly above the hip, finally made an appearance.

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Positive Rituals and My Evolving Morning Routine

The backstory

At an ALS clinic visit, the physical therapist recommended home exercises to strengthen my right-side gluteus medius muscle and improve my uneven walking gait. Of the numerous exercises suggested, the only two I could do, given my balance problems when standing, were side-lying leg raises and clamshells.

Even though I’d been doing them religiously for the past several months, I still had a noticeable “hitch” when I walked. Then one day last week, I felt the muscle kicking in! It was what I call an “I hear more voices in the choir” moment. Let me explain.

Before ALS, I imagined I had a full choir of leg muscles that moved me through my day. Now, my ALS symptoms have me relying on fewer and less coordinated muscles. My new vision is of a small a cappella group bravely singing a song.

But when I felt that gluteus medius finally working, my a cappella group grew to a choir with music. Granted, some days my leg and hip muscles went back to being a small a cappella group, and on other days I had the choir with music. It didn’t matter to me, because when things went right, I felt happy. I appreciated the moment.

Seeing the glass half-full

So many of us who live with ALS expect things to go wrong and focus on the negative. Our language is peppered with statements such as “It’s just one thing after another” or “I’m waiting for the other shoe to drop.” We expect problems, then declare “See!” when they happen.

I challenge you to spend a week, or a day, only noticing the things around you that are going right. Challenges or problems may happen, but in between are the moments or even hours of calm. Notice that. Pay attention to how you’re feeling, acknowledge the nonevent, and appreciate the opportunity to feel unruffled and composed.

And then tell someone else about the positives in your life. Research shows that telling others about personal positive events increases the sense of well-being, especially when those you tell respond enthusiastically.

It’s a win-win situation. You’ll brighten their day, and it’s one more way we can learn to live well 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.


Donna ellis urgoiti avatar

Donna ellis urgoiti

Thank you Dagmar,

Bravo, be grateful for what’s working and that can lift one’s spirit and daily outlook.

Diane Reardon-Jorge avatar

Diane Reardon-Jorge

Bravo! Dagmar, you are amazing! My older sister was diagnosed last December and has had a really rough time. Her husband is so caring and does it all for her. I often print some of the stories posted here to give her some encouragement. She seems to brighten up and I hope this will help her. Thank you for your courage!

Best wishes,

Louise A Cort avatar

Louise A Cort

Dagmar, your positive and productive messages have been an ongoing source of inspiration. Thank you now for this one.

I am especially struck by your determination to keep your muscles moving. I do not believe you have written anywhere about exercises for arm strength. Or am I wrong?

Dagmar Munn avatar

Dagmar Munn

Louise, you are correct. Because my ongoing symptoms center around my weak hips, legs and feet - - that's where I've focused most of my writing. But, I do exercise my arms & hands (because our body parts ARE so connected!) and... I will take your hint and write about my arm exercises. Thank you for the nudge! Dagmar

Denise Moran avatar

Denise Moran

Hi Dagmar, Thanks for your inspiring writings. I was wondering if you would share your regime besides exercise. For example, what type of diet do you use, what medication and supplements. I realize you cannot make recommendations for medications and such but it may be helpful to just have any idea of what seems to work for some people. Thank you, Denise

Dagmar Munn avatar

Dagmar Munn

Hello Denise, Thank you for your kind comments. I'm happy that what I write inspires you!

As for my "regime" it's pretty simple. I don't follow a specific diet per say, I eat a variety of wholesome foods and I'm all-inclusive: meat, fish, chicken, occassional chips & dip, do-nuts, and other fun food. My diet provides me with a good variety of nutritents, so I don't have to buy and take vitamins, etc. My only medication is Riluzole, which I've taken for the past 13 yrs. What works for me, is to live on an even keel, don't take drastic measures, and keep my mind busy on things other than obsessing about ALS. Dagmar

Lumi Bodea avatar

Lumi Bodea

Hi Dagmar,
You are the GREATEST inspiration and example in our lives. You are the power fighting this condition. Your STRONG mind makes half of the treatment. GOD BLESS YOU and you are THE ONE!!!!! THANK YOU!!!!!

Dagmar Munn avatar

Dagmar Munn

Many thank yous Lumi.

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