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    • #14121
      Dagmar Munn
      Keymaster

      The topic of “ALS and Exercise” continues to be a popular one among our Forum’s members. This discussion will try to focus on the technical or physiological aspects and issues, rather than the “how to.”

      To join the “how to” discussion of ALS and Exercise, just use this link: https://alsnewstoday.com/forums/forums/topic/exercise-and-als-continued/

      I’ll start us off with my thoughts on the topic. I’m looking forward to reading yours.

      Let’s dive in!

    • #14124
      Dagmar Munn
      Keymaster

      Thank you Jean-Pierre for sparking this new topic! Here is what he said:

      I think we have a limited vocabulary to describe this new situation so it is difficult to express our thoughts.

      In my opinion Dagmar is right to talk about little exercises like learning new tricks to move the body and adapting to the new ALS life. What is probably important is the complexity of the activity and not its energy consumption.

      The reason I see is that complex activities like dancing or swimming are actually involving the upper neurons. Lower motor neurons are involved in more basic biological functions involving speed and strength. Muscles use a lot of energy and the energy supply is limited in ALS so it must not be wasted.

      If there is a way to preserve upper neurons by activities such as what Dagmar suggests, then it is a sort of breakthrough in ALS. Dagmar IMO you should try to think more about this, how to involve upper motor neurons with complex activities without using much energy and adapted to limited motor capacity, all would benefit.

      My reply is directly below:

    • #14125
      Dagmar Munn
      Keymaster

      Jean-Pierre, Before I can address your comments, I need to sort through a few of your terms and definitions. This will also help our members better understand this discussion.

      • Complex exercise: Exercise can be classified as complex vs. simple. Dancing, tennis and swimming are examples of complex – – intricate movements that require coordination. Contrast with “simple,” such as arm circles, rocking side-to-side, or dog-paddle in the water – – these can be done without much mental attention or coordination. Rather than compare Complex and Simple, I would rather focus on comparing Formal vs. Informal.
      • Formal movement is all activity (complex or simple) done with the intention to maintain or improve the body’s fitness. Informal represents all the incidental movements we do (or did before ALS) throughout the day. Such as, making a meal, getting dressed, doing laundry, dusting, fetching the paper and so on. For the ALS patient, the lack of informal movements throughout the day contributes greatly to muscle atrophy. These are the movements I encourage everyone to build into their day: https://alsnewstoday.com/2019/11/12/movement-exercise-daily/

      Upper Neuron vs. Lower Neuron: These are definitions of the type of ALS, upper and lower neurons do not control individual activities of speed-strength or slow-gentle movements. This link has a great definition and description of upper vs. lower neurons: http://web.alsa.org/site/PageServer?pagename=ALSA_Ask_October2010

      Bottom line: Upper Neuron Disease (located in the Brain stem) is typically spasticity of the muscles and strong-fast reflexes. Lower Neuron Disease (located in the spinal cord): has symptoms of weakness and fasciculations.

      Finally, research HAS shown that physical movement (especially low intensity, long duration) can be neuroprotective. Yes – – it protects our motor neurons from dying off. As described in this recent article: https://alsnewstoday.com/2019/11/07/exercise-slows-motor-neuron-loss-in-als-mice-but-type-key-study-suggests/

      This particular study contains good news plus a hint towards what pALS can do right now, to help protect their motor neurons. The article itself may initially be confusing, so let me explain.

      When reading the actual study, the results become clearer. First, we learn that exercise protects the cell wall of the motor neuron, thus preventing neuron death. In addition, exercise modalities involving small motor neurons show better protection. Let’s sort through the findings:

      • Contrary to what is inferred in the article, there is no controversy regarding the benefits of exercise for pALS. Ten years of published research (on human pALS, not mice) does exist. ALS News Today has this page: https://alsnewstoday.com/als-and-exercise/and, I’ve written several columns on the topic. For example: https://alsnewstoday.com/2017/07/18/als-and-exercise-webinar-gives-a-resounding-thumbs-up/ And here is the link to the webinar that reviewed 10 years of research: https://www.neals.org/for-people-with-als-caregivers/educational-webinars/exercise-and-als-a-discussion-of-research-and-practical-recommendations
      • Don’t get hung up on the “running vs. swimming” concept. This wasn’t a study comparing the exercise modalities of running and swimming, rather it compared “fast vs. slow” neurons. Mice cannot do Tai Chi (involving slow, small motor neurons) or judo (fast, large motor neurons); mice can only swim, run or hang on a metal rod (this one used for strength studies). So, the mice who ran represented human activities of long-duration, low-intensity such as: biking, tai chi, swimming, etc. – which typically use small motor neurons. The mice who “swam” represented human activities of high-intensity, short-duration such as: sprinting, tennis, judo, gymnastics, etc. – – typically relying on large neurons.
      • In addition, this study showed that exercise stimulated the neuron cell walls and helped prevent motor neuron death. However, exercise could not restore motor neurons lost pre-diagnosis (pre-symptomatic), but it was beneficial for keeping alive what motor neurons we have left — post-diagnosis! Bottom line: the low intensity exercise couldn’t bring back motor neurons already lost – – but, can help prevent future loss.

      This is why I am such a proponent of DAILY moderate & varied exercise movements. Our muscles and motor neurons need the constant stimulation to protect from further cell death.

      Low-intensity, simple movement exercise remains the preferred choice.

       

    • #14148
      John Russell
      Participant

      As you know, Dagmar, I agree with you strongly. This is the best and most easily understood analysis of why I have read so far.

    • #14198
      Norman S.
      Participant

      This is a subject that I have gotten very vague advice from my doctors about.  Basically what I hear is “take it easy”… “if you’re tired the next day you’re overdoing it”… etc.   I’ve kind of done my own thing as a result of this, and here is what I did:  I immediately quit running (I ran three times a week, 3 to 4 miles) when I started getting drop foot, I did keep lifting, but I think I made my drop foot worse by lifting, so I quit lifting too.  I am still swimming.  I’ve swam my entire life, and in the last three years (diagnosed almost 4 years ago) I pretty much swim three or four times a week going around 3,000 yards/meters per workout.  Despite all this, I continually get weaker.  Now I go around 2,000 yards/meters.  In the beginning weakness was totally in the legs, I first lost my kick, and then I lost the strength to push off walls that well, but in the past four months my arms and shoulders are seeing significant weakness.  I have to admit though: I DO FEEL BETTER AFTER I swim.  More limber.  Lot’s more to point out about this.  So if anyone wants my opinion hit me up.

    • #14223
      Dagmar Munn
      Keymaster

      Norman, I agree that swimming is a beneficial (and feel good) exercise for ALS. I too was swimming daily laps (plus a yoga routine on the deck) at the time I was diagnosed.

      I kept it up until the water temperature was too cool for my muscles. I also observed weakening in kick and arm strength. I finally quit 4 years in, when dysphagia (trouble swallowing liquids) caused me to fear drowning from a glass of water – – not to mention floating in a pool of it!

      Keep it up as long as you can. But remember you can always augment with dry-land exercises. Especially range-of-motion movements.

    • #14230
    • #14234
      Diana Belland
      Participant

      Thank you for posting this article, Jean-Pierre!

      I read the abstract and the complete article.  This seems to have been a very well structured study; the results should  encourage all of us who are trying to follow regular exercise routines.   And it points up what Dagmar, a pioneer in the field of exercise therapy for ALS, has been suggesting to her readers all along.

      Since I go to the Y three times a week to ride the recumbent bicycle, this section stood out for me:  “The submaximal (at 80% of GET) aerobic exercise on the bicycle three times/week for 12 weeks had the effect to elevate the GET, which could improve the ability to sustain submaximal daily activities, such as walking or gardening, at a higher intensity or for longer time than before the training, and with less fatigue. This result suggests that part of the impaired aerobic capacity was not only due to the disease itself, but also to the muscle disuse, and that the right dose of exercise could help to restore (at least in part) the reduced aerobic fitness.”

       

    • #14243
      Dagmar Munn
      Keymaster

      Yes! ….thank you Jean-Pierre for sharing this study… and yes! I am pleased to have confirmation of my “gut feelings” about the benefits of exercise & ALS.

      Bottom line of this study: This study showed that a combined moderate-intensity aerobic and strength training program, tailored to the physical capacities of each individual, can improve aerobic fitness and maintain physical function in individuals with ALS.

      The keyword is “maintain” physical function. So many pALS dive into an exercise program expecting to “strengthen” or increase their muscle strength – – and quit when they don’t see body builder results. I believe that once you have ALS, that type of training and muscle response is long gone. The priority is to maintain what strength you have AND to maintain the “communication” of signals between brain and muscle.

      From my experience, our muscles are just fine. But, with ALS they are not receiving good movement signals from the brain (the ALS dysfunction is in our brain stem and spinal cord). So, that is why continuing to do traditional sports or gym exercise are so difficult. Our body’s need to find ways to re-connect the movement communication pathway – – and fundamental movements (done daily) meet that need.

      Fundamental movements are those ways we all learned to navigate the world as infants and toddlers: rolling sideways, crawling, rocking, moving our head in all directions, balancing on our knees or feet, etc.

      Yes, they “feel” too simple to work, but they do.

      They are multi-dimensional movements as opposed to single plane (lifting a weight up and down) plus, keep our inner-ear (balance centers) stimulated.

      Include the movements of simple swimming, pedaling a bike, walking, swinging the arms, bending, reaching… and while our brains are re-establishing connections, our muscles are maintaining their strength.

      And Diana nailed it with her quote from the study:  impaired aerobic capacity was not only due to the disease itself, but also to the muscle disuse. 

      —– I believe we default to blaming ALS for our muscle weakness when in reality it is due to our lack of commitment to daily movement, giving in to feeling sluggish and giving up, doing the wrong intensity/type of exercise or believing those that say there is no hope or gain in doing daily therapeutic movement (aka, exercise).

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