How I set fitness goals — and achieve them — in life with ALS

I realize that the words “goals,” “improvement,” and “ALS” don’t always appear in the same sentence, but for me, they do. That’s because, over the past few years, I’ve followed a strategy of setting personal fitness goals and using my ALS clinic appointments as the mile markers for those goals.

I also recognize I’m unusual in doing this. Although ALS is known for symptoms that quickly and constantly worsen, mine have been advancing at a much slower pace compared with most patients. Because of my slow symptom progression, my ALS clinic visits are scheduled at six-month intervals.

So I figured, why not take advantage of the downtime between visits to work on my fitness goals, and when I’m there, rely on the clinic staff to assess my improvements?

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Improvement?

OK, OK, you might be questioning my desire to improve. I’m sure you’ve read that with ALS, all we can hope for is to maintain our current health state. Damage from the condition can’t be reversed. That’s true, but over the past 15 years I’ve been living with the disease, I’ve learned that not all muscle weakness is because of ALS. Some of it is my own fault.

In my column “What I Thought Was My ALS Was Actually an Impostor Symptom,” I described how patients with neurological conditions like mine experience weakness in certain muscles that would normally be strong, simply because we’re sedentary. It’s called learned nonuse, or disuse atrophy.

I have to admit that since ALS has severely weakened my feet and lower legs, I now fall into the inactive category. However, when I do add specific exercises to my daily routines to counteract disuse atrophy, I see improvements in my muscle strength.

Goals?

But creating goals is one thing; accomplishing them is another, especially if we’re impatient and want to see results right away. That can lead to us giving up.

To keep myself from giving up, I use a technique where I break down a goal into its smallest parts — and I mean small. For example, I wanted to improve my leg strength by doing repetitions of chair squats. But when I discovered I could perform a maximum of one, my ego needed immediate adjustment!

Rather than give up, I did a mighty one — twice a day, for a whole week. The next week, I did two in a row, and I kept increasing by one until I was doing 10 repetitions two times a day. Whew.

I’ve continued to use the “break-it-down” method for the past several years with good results. At my recent ALS clinic visit, the physical therapists gave me a thumbs-up on my ability to walk with my rollator using good posture and a steady gait. Several other therapists confirmed my efforts to improve my speech were working, telling me, “We can understand your words, and you’re speaking well.”

What are my new goals? More leg strengthening — I want to demonstrate a smooth transition from sitting to standing, followed by immediately walking forward. I also want to fine-tune my pronunciation of the “K” sound, as in “six” and “scooter.” Right now, my attempts sound like “sich” and “shooter,” so improvements will be welcomed.

That’s the thing about this disease: It gives us challenges. But I believe that by setting goals and not giving up, 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.