I have met the enemy, and surprise! It’s not my ALS this time.

ALS has taught me many life lessons, and a very important one is to never give up.

For example, some days I get up, get going, and suddenly notice that one of my body parts isn’t moving as well as the day before. It’s a small, quirky thing, like having a kink in my shoulder, a knee that buckles with every step, or a tongue that won’t form the “th” sound. Of course, I immediately sort through a mental list of possible causes — a list that begins and ends with “Is my ALS getting worse?”

Even though my first impulse is to blame the disease, I’ve learned that sometimes I’m the one to blame. And what I’m experiencing is, fortunately, a temporary setback. Let me explain.

Recommended Reading

March 10, 2023 News by Lindsey Shapiro, PhD

CNM-Au8 found to delay clinical worsening in ALS HEALEY trial

Mindless mindset

Sometimes the odd symptom I’m experiencing is the result of an I’m-bored-doing-these-exercises mindset, which I occasionally fall into.

Why? Because even though I have a daily regimen of doing short bouts of easy exercises throughout the day, my mind wanders while I’m doing them. On those days, instead of doing 10 arm circles, I’ll do only six and tell myself I’ll do the full 10 tomorrow. The same thing happens the next day, and the day after that. Soon, I’m wondering why my shoulder is feeling tight.

Blame my ALS? No, I have to blame myself.

I’ve since renewed my commitment to do each exercise with full attention, and even added a few new ones to help keep me focused.

Slack speech

Several weeks ago, I was excited about the improvement in my speech from practicing vocalization drills I found online. Then I spent long days focusing on several writing projects. I skipped my drills entirely. When I finished and wanted to read a passage out loud to my husband, I was shocked at my difficulty in pronouncing certain words. Was my ALS getting worse?

No, it was my fault. I shouldn’t have slacked off.

I’ve since created a special time of day to practice my vocal drills and haven’t missed a session yet. My “th,” “rrr,” and “ka” are much better, and I’m feeling more confident when conversing.

Life’s trials

Then there was the long disruption that happened to me last year when I came down with COVID-19. I thought it would last only a few days, but it actually knocked me back for two weeks, plus two more weeks of coughing and feeling weak and fatigued. All my ALS symptoms were amplified. I felt all my past months of fitness gains slipping away and had to start over again.

Blame ALS? No, it’s a one-off occurrence and not likely to happen again.

I could easily have given up after each of these setbacks and not tried to regain what I lost. I didn’t, because I knew that I was dealing with impostor symptoms of ALS — the disuse atrophy I’ve written about.

Living with ALS means keeping a whole plate full of health concerns in balance. For me, the mental aspect is one of the most challenging. But by seeing the reality beyond my emotions and applying the right amount of motivation, I can successfully navigate my life with ALS.

I believe this is something we all can do — and you can do it, too.

Together we can learn to live well while living 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.