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    • #19455
      Dagmar Munn
      Keymaster

      Get ready for a flurry of viral articles and posts on social media bashing exercise and ALS. Although we’ve had over 10 years of published research showing the benefits of exercise once you’ve been diagnosed with ALS. New research has been published that delves into the controversy surrounding theories that exercise (or sports) increases the risk of developing ALS in the first place.

      Because the whole topic of exercise and ALS has been controversial, and it can become somewhat confusing, I appreciated learning from this study that: we have to define what kind of exercise, and, type of ALS, in order to answer the question.

      You can read the full article here: https://www.thelancet.com/journals/ebiom/article/PIIS2352-3964(21)00190-0/fulltext

      Snippets from the research findings:
      • For persons with genetic C9OIRF72 ALS: intense, strenuous, and competitive exercise may have been a causal risk factor for developing ALS.
      • But strenuous exercise was not a causal risk factor for those with sporadic ALS.
      • Likewise, sedentary behavior was not significantly associated with ALS. (So, a healthy, active lifestyle is still good to pursue)

      It was interesting to me that DIY exercise such as yoga, going for a walk, light workouts, etc. had no increased risk factor for developing ALS for either genetic or sporadic ALS – – it was the intense, strenuous kind, and then only a risk for those genetically predisposed to ALS.

      Other risk factors debunked in the study results
      • Body fat percentage is not significantly associated with ALS.
      • Neither is ALS associated with smoking, level of education, type 2 diabetes, or head trauma.

      The study’s authors propose that there is a functional link, “in which exercise amplifies toxicity resulting from a genetic mutation. Their study does not support a causal role for low-intensity, infrequent exercise, but does support toxicity resulting from high-intensity, frequent, leisure-time exercise.”

      Questions for our forum members:

      If you have the genetic C9OIRF72 ALS, did you participate in intense, strenuous exercise prior to being diagnosed?

      If you have sporadic ALS, will these results help resolve your questioning that your exercise prior to diagnosis was a risk factor or a cause of your ALS? Does it make you feel better to know it wasn’t a cause at all?

    • #19478
      Lisa Bonahoom
      Participant

      I have the C9orf72 mutation, and I definitely did the strenuous exercise thing.  Interesting finding in that article.

       

    • #19485
      Mike Leist
      Participant

      I did frequent, strenuous exercise, and I have sporadic ALS (no genetic test). But I’ve been involved in competitive sports since I was a kid. I was diagnosed at age 45. I continued competitive and strenuous exercise nearly two years after my diagnosis, and kept records on my strength levels in the gym throughout. I found that I lost strength much more quickly when I took breaks from my workouts / sport due to vacations. Then, 3.5 years after Dx, when I was losing my balance a lot and moved to a power wheelchair, my strength declined precipitously when I couldn’t exercise anymore. So studies aside on the causes of ALS, I can say that once I did have the disease, exercise was critical to helping me maintain strength longer. Use it or lose it applies to everyone, but to PALS even more so.

      • #19558
        Karl Schachtner
        Participant

        I have sporadic ALS and also did frequent, intense, competitive exercise prior to my diagnosis. My disease has progressed slowly and I partly credit my condition starting out, and my continuing exercise since then. I was able to continue regular bike rides with a serious group for 3+ years. Now, 4 1/2 years from diagnosis, I’ve switched to a recumbent 3-wheeler as balance on my feet (not on bike) has become a big issue.
        I don’t think exercise was the cause or that I’ll ever know the cause of my disease, but I’m definitely in the “use it or lose it” camp!

    • #19506
      Dagmar Munn
      Keymaster

      I’m like you, Mike. I’ve been active in sports and fitness-exercise my entire life. And I have sporadic ALS.

      But, I don’t believe my activity level was the cause of my ALS. Rather, it gave me a body that was in tip-top shape and better prepared to handle the challenges of living with ALS. If I had any loss of muscle strength, at least I was at a level where I could afford to lose a little and adjust. Following diagnosis, I did change the type, frequency, and intensity of my daily exercise. I still manage to do 1-1/2 hour a day – – but it is broken up into smaller segments and spread throughout the day. I also focus on fundamental movements: hands & knee crawling, rolling, twisting, etc. (I’ve written many blog posts about these). Regular, gentle daily exercise has helped me retain my flexibility, balance, and strength.

      Intense exercise may be a risk factor for genetic ALS. But once you have ALS, research supports that we keep ourselves healthy and moving by not fearing to continue following a sound therapeutic movement program.

    • #19508
      Kathy stitz
      Participant

      How many different genes are there that they can test for to determine if someone’s ALS is genetic or not?

      • #19511

        There are ~120 genes with mutations related to ALS in ALSSoD database.
        But 3 genes are very common: C9orf72, which is found in half of familial cases, SOD1 in one out of 5 familial cases and FUS gene mutations.

        Each of those genes are pathogenic only if the bear mutations, for example SOD1 normally protects us from oxidative stress, but some mutations make it less efficient. For each gene there are dozen mutations, sometimes hundreds, each corresponding to a different disease phenotype. For example some pALS with some SOD1 mutations can live up to 20 years after diagnostic, which is often equating to a normal life span. Some other SOD1 mutations are associated with very short life.

        But ALS genes are certainly not the main cause of ALS, as otherwise it would strike very early in life, like in SMA, a motor neuron disease that strikes toddlers, which is due to a mutation in SMN1 gene.

    • #19534
      Amanda
      Keymaster

      Kathy,

      There are about 120 mutations identified right now with C9Orf and SOD being the most common.  Even within the specific gene – the mutations varies. According to the research team at U of Miami, there are likely many other gene mutations that have yet to be identified.

      • This reply was modified 2 months, 1 week ago by Amanda.
    • #19568
      Dagmar Munn
      Keymaster

      Intense exercise for those genetically inclined for ALS may have as the research says, increased their body’s chances for developing ALS… but, for both familial and sporadic ALS, once you have it, moderate exercise has been deemed beneficial. And even can slow down symptom progression.

      Here’s a brief article explaining a study of strength training slowing down symptoms: https://www.ideafit.com/uncategorized/strength-exercise-may-slow-als-progression/

      And the study that was referenced: https://n.neurology.org/content/68/23/2003

      Personal comment 🙂 No need to go out and purchase a set of dumbbells. For most of us, just lifting our arms or legs alone constitutes as weight training in my book! 😉

    • #20192
      Dagmar Munn
      Keymaster

      The ALS Therapy Institute recently hosted a webinar featuring Dr. Jonathan Cooper-Knock, discussing his recent study and findings on how frequent intense physical exercise may be a risk for some forms of ALS.

      You can watch the webinar here: https://youtu.be/B4FuZrMXFck

      And read an interview with him here: https://www.als.net/news/connection-between-als-and-exercise/

    • #20197
      David Crellin
      Participant

      Hi Dagmar, I’ve been on two Zoom meetings with Dr Jonathan Cooper-Knock & had a meeting with Prof Dame Pamela Shaw.

      Jonathan is clear in saying he cannot give specific advice to people. My 29yr  old son joined one of the Zoom meetings & met Pamela Shaw. He was 2nd in a 37 mile, 5,000ft of ascent fell race (mountains in local dialect) last Saturday in a time of 6 hours, and from 21 August is running 49 (50) Scottish 3,000 ft Munros in seven days to raise funds for ALS Research. I’m climbing the extra 50th on my all-terrain mobility scooter to summit & descend with him, but not at his pace!

      Jonathan’s response: ‘That’s great, Joe. Keep on running.’ Joe carries the c9rf72 gene mutation like me.

      Only 17 people with c9 ALS in the sample population studied. Mmm….

    • #20198
      David Crellin
      Participant

      And if you watch the YouTube clip you’ll hear me asking whether correlation equals causation.

      My mother was captain of hockey & tennis and played both for the county, and was a sports teacher. She stopped strenuous exercise after my sister & I were born, aged 29. She rode a bike slowly to the shops in her 40s. Aged 45 first signs of MND, diagnosed aged 49 and died 5 months later. She was tall and thin. Her mother, also tall and thin, died aged 65 from dementia (FTD?). She helped out on her farm, but no strenuous exercise.

      Whereas I was always able to just put on running shoes and run 15 to 20 miles and feel fine, get on a bike and cycle over 100 miles ditto, kayaked 60 miles one week, all without training. I also worked out in a gym to exhaustion on treadmill, rowing machine & spin bike for an hour x3 per week.

      I’m 6’3″ and have never weighed more than 12.5 stones (175lbs?).  I’m 63 and progressing relatively slowly

      So which comes first? The cart or the horse?

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