Let’s Get Physical: The ALS Exercise Debate

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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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 Services, and are intended to spark discussion about issues pertaining to ALS.

20 comments

  1. Fabienne Guerlain lannoy says:

    G des paresthésies qui commencent dans mes mains et mes jambes c parce que je les bouges pas assez g même des crampes dans les doigts aujourd hui ou je manque de vitamines merci

    • Rick Jobus says:

      If you are referring to transcutaneous electrical nerve stimulation, I have used it; both as a ST treatment (administered to my neck and face), and as a PT treatment to stimulate muscle contraction in my legs. I am not aware of any data. Like anything else related to exercise, the overexertion concern is present.

      • Adele says:

        Hi Rick,
        Thank you for your input.What is ST and PT? I used Compex in a different modes for 20 min. each time. I truly believe in this way of stimulating muscles, I am surprise that is not part of ALS treatment.
        Could you share the name of the unit that you are using, probably some units are better than others, more effective.

        • Rick Jobus says:

          Adele, ST is speech therapy, and PT is physical therapy The therapists brought their own units, in fact ST was conducted via a pricey vitalstim machine. I don’t have my own tens.

  2. Charlie says:

    ‘Exercise for pALS’…. one of the best examples of a placebo one could wish to find.
    Like…say ….. aspirins for brain tumour patients.

    • Adele says:

      Hi Charlie,
      It is hard to exercise, needs motivation and ability to move. Did you try transcutaneous electrical nerve stimulation? Theoretically it makes sense.
      I agree with most of your comments but not with this one.

      • Charlie says:

        Adele, I don’t mind at all, and I certainly don’t care, if you disagree with my view. It’s a free world.
        When I had a temporary neuro-muscular paralysis way back in day I had electrical nerve stimulation. It was fascinating to watch my muscles twitch with activity as the nurse worked to keep them from atrophying.
        Thing was, I knew and the docs knew, that normal function would return slowly and surely to my bruised and battered nerve junctions, and that normal functionality would return, and it did.
        With ALS, of course, the neuron is dead and so the muscle will not return to functionality.
        However, if the pALS finds it an enjoyable and satisfying and time-consuming, or even a hopeful activity, I say ‘go for it.’
        It’s not doing any harm. Or good.

        • Adele says:

          Hi Charlie, it is good to have discussion. I am a newbie to ALS problems and ware that rearsch on molecular level did not produce usefull results. We have to look at different possibilities.
          All neurons are not dead. Electronic muscle stimulation induces muscle twitching which helps blood circulation, that is beneficial, same time slows down muscle atrophy.

          Did you hear about robotic leg bracelets? Paraliezed people can wolk with them. I would like to learn more about it.

  3. Charlie says:

    Rick, its a placebo if it makes no difference to the illness but simply makes the patient feel something is improved.
    If there is no data to show efficacy then it is a placebo.
    I don’t know why you would disagree with me on that.

  4. Andrea says:

    I have had ALS for 4 years (dx at 33) and am stronger now than I was last year. I began Pilates-based PT once a week last January. I’ve also consistently been swimming and doing water exercises twice a week, riding my recumbent trike and have recently upped my work on my handcycle. Using a respiratory trainer, I’ve been able to increase my lung capacity and diaphragm strength. So yeah, I believe in exercise.

    Am I a typical ALS patient? No, probably not. I have slow progression, mostly upper motor neuron symptoms (for reference: I use a walker, can still drive, my speech is slurred, but mostly intelligible).

    But I kept waiting around for ALS to kill me and it didn’t. While I don’t think I’m reversing the disease, I am keeping more in front of it than I would have been. There’s no other magical diet or drug I’m on. I work hard on my physical health, but I get to live a longer, happier life — fair trade, I’d say.

    I worry about how many other ALS patients are like me and aren’t being encouraged to exercise and whether they are declining faster than they would have otherwise. TO BE SURE, I think there are patients who decline so rapidly that exercise wouldn’t help and could be harmful. But we all know that heterogeneity is one of the main hallmarks of this disease. So discouraging (or not encouraging) exercise across the board is a disservice — especially with all the evidence to the contrary.

  5. Nigel Jones says:

    In my opinion and experience ALS / MND is not a disuse atrophy, the motor neurones are dying off. Much as I applaud Andrea’s positive spin I suspect she’s atypical. I found hydrotherapy exhausting, partly because of the water temperature but mainly because I tried too hard to please the well meaning Physiotherapist. I had no positive gains on the contrary I am worse on the days after I have for instance walked further than usual. My range is slowly decreasing. Where Physios may help is with alleviateing contracture.
    I’m one year since diagnosis, walking short distances, unable to do buttons, speech becoming affected, still driving thankfully.

  6. Hi Nigel Jones,I agree with you this is a great informative post you have shared on this page about the effects of muscular exercise with the caution of debatable practice ,But If you feel a pain in a mussels of a body due to the stretch of tissues after lifting a heavy weight near a spinal cord then you must go to the clinic of physiotherapist for a starting of proper treatment due to the resolving of this kind of health issue and also understand all the import guidelines of a doctor with the steps of muscular exercise which is helpful for you to eliminate a pain of mussels rapidly with in a short interval of time ,So you must take care of your self and apply all these guideline of doctor in the routine of daily life otherwise your pain of muscles will be increase day by day and this is very dangerous of your health .
    Thanks.

  7. Dagmar Munn says:

    There is no ongoing debate over whether muscular activity is harmful or beneficial to those with ALS – – it ‘s been proven – – it is beneficial. However, the crux is “what type” of muscular activity… traditional calisthenics, weight lifting, running and many sports prove more exhausting and debilitating than helpful. The key is to change our perspective on both “exercise” and outcomes. Range-of-motion drills for every joint and muscle are beneficial. So are the fundamental movement patterns such as rolling, crawling, rocking, etc. and those found in yoga and pilates. Movement and exercise shouldn’t be tasked with curing ALS, rather outcomes now turn into goals of maintaining strength, mobility and function – – for as long as possible. For more, here’s my article with links to 10-years of studies on exercise and ALS. https://alsnewstoday.com/2018/03/27/3-als-news-items-caught-my-eye-last-week/

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