Let’s Get Physical: The ALS Exercise Debate

“Use it, or lose it.”

That was the motivational summary statement during my first post-ALS diagnosis physical therapy (PT) session. As my condition’s horrific prognosis continued percolating in my brain, I replied, “Don’t you mean ‘use it, while you watch yourself lose it?’”

There is an ongoing debate over whether muscular activity is harmful or beneficial to those with ALS. With muscles already deteriorating, the negative argument centers on the idea that overexertion can accelerate functional loss.

Take strengthening exercise, for example. The Cleveland Clinic’s website suggests that PT can help people with ALS, but they do not recommend strengthening exercises. On the other hand, the Massachusetts General Hospital’s website references small research studies that showed that light strengthening may be beneficial. In a 2014 article, “Exercise: Helpful or Harmful in ALS?“, a doctor and a physical therapist from the Forbes Norris MDA/ALS Research and Treatment Center wrote that “animal models of ALS have shown benefit from moderate exercise, but acceleration of weakness with intense exercise.”

How, then, do we proceed? Is it light or moderate exercise? Or none? How does one distinguish between moderate and intense within the context of ALS? The answers to these questions and a plethora of others are best given by a physical therapist well acquainted with ALS. If such a person is not readily available, I’ve found that a physical therapist willing to do requisite research will be as effective. At the minimum, you should expect an assessment, a customized exercise program specific to that assessment, and training for its execution. If applicable to your program, physical therapists may provide a variety of resistance bands appropriate for fluctuating strength and flexibility.

Request aquatic exercise if the therapy is outpatient and the facility has a pool. By conducting your care in water maintained at therapeutic temperatures, you have greater control over your movement than with out-of-water workouts. Aquatic exercise is also less painful than other types of exercise, because water buoyancy partially supports your body. The use of water allows you to function at levels that are not possible outside of this environment. If positive physical gains are possible, aquatic exercises maximize them.

As for unsupervised exercise, by anyone’s reckoning, it’s deemed a slippery slope. Armed with only sincere and conjectural caution, l decided to be aggressive with my at-home fitness program. Early after my diagnosis, l worked out on a Bowflex system and rode a stationary bike. From that point forward, until I no longer was physically able, I pursued a daily, 90-minute routine combining both the Bowflex and bike, upping my performance targets as fast as I comfortably could.

These days, owing to functional erosion, my protocol is far less rigorous. I “work out” three to five days each week, depending on my condition. For my legs, an aide performs range-of-motion exercises as I simultaneously attempt to fire the associated motor neurons. For my upper body, I complete a variety of maneuvers with a 2-pound rod. For aerobic maintenance, I use a mini-cycle and pedal with my arms. I conclude with an incentive spirometer, slowing inhaling and then momentarily holding my breath to provide pressure to my lungs, in the hope of popping open alveoli.

Before embarking on any autonomous fitness regimen, no matter your disease state, work with a physical therapist as a coach. And always listen to your body:

• Stop when fatigue sets in, rather than pushing through it.
• If you are sore the next day, you have overdone it. Take a break until the soreness has abated.
• Practice moderation; start low, and move up slowly.
• Do not subject very weak muscles to this kind of exercise — daily activities provide enough strain for them.

That said, the benefit of exercise may be negligible, or even invisible. A 2017 ALS Association-funded study by Dr. Nicholas John Maragakis of Johns Hopkins University and others showed that resistance, endurance, and stretching/range of motion programs “are all safe to be performed with the specified regimen without any worsening of outcomes as related to ALS function.” However, the study also found these exercises did not stall disease progression.

With no likely tangible return, why bother making the investment? I found that answer on the Cleveland Clinic’s website: “Physical therapy can maximize existing capabilities.”

Motivated by function optimization and the awareness of my new baseline, I push on. By “baseline” I mean the body’s expected performance given a variety of factors, such as age, heredity, gender, geographic location, medical history, body mass index, past and current lifestyle choices, education, and occupation. Illustratively, all other elements being equal, one’s baseline is different between the ages of 20 and 50, or being a smoker versus non-smoker, or working a stress-free job as opposed to one laden with it. The perturbations go on and on. I am adding the overriding variable of ALS to my personal equation. Consequently, I am determined to be the most valid ALS sufferer that I possibly can.

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