I have met the enemy, and surprise! It’s not my ALS this time.
Sometimes I'm to blame when my symptoms get worse and need care
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.
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.
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.
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.
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Thanks for this article, Dagmar! What you describe so eloquently is very true and a great reminder. I go through the same thing myself regularly. It's challenging to be focused and give every exercise your full effort, especially when you're tired or feeling a little bored by the routine. But the benefits of putting in the effort (or not) become evident very quickly — I find that I really do get out what I put in. You are very motivational! :)
Is there a link to the vocalization drills that you do and have found useful? Thanks!
Karen, I use a combination of methods - - not just vocalizations. And I've written numerous columns about my process. Here are several columns that I think will be of help to you:
Debra Diane Jones
I would like to know what exercises you do. I do some, but get bored with them. Sometimes I'm just bored with everything. Guess I need to get motivated!
Debra, I have developed a daily flow (I guess, regimen)of movements - - sort of a mix of PT, yoga, pilates, and gymnastics (my roots), broken up into short sessions throughout the day. First thing AM: rolling, stretching, leg work while in bed; after breakfast: 15-min chair exercise; mid-afternoon: walking on my rebounder; after dinner: floor work of crawling, yoga, pilates, stretching. (whew!)
I have quite a few posts describing the various routines. You can find them here: https://alsandwellness.blogspot.com/2017/09/als-and-wellness-blog-archives.html
If you have questions or need more information you can contact me via the ALS news Today Forum: https://alsnewstoday.com/forums/
Best wishes to you!