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  • Activity induced

    Posted by juliez on May 21, 2024 at 12:38 pm

    Hi all- we are at beginning of genetic screening for ALS. My father had ALS and now my cousin has ALS.

    I have read on the ALS assoc website, that if you have an effected gene for ALS it may be more likely to be turned in, active disease, in people who participate in certain activities. I think the mention was football, etc. I’m wondering if this would apply to someone who trains for half and full marathons on a pretty routine basis? The question is in regards to my daughter. She is 30 and has been doing some pretty intensive running the last 5-8 years.

    Thanks for any info. Or if you can point me in the right direction.

    Johnny5 replied 3 weeks, 1 day ago 7 Members · 14 Replies
  • 14 Replies
  • Fran Finney

    Member
    May 21, 2024 at 4:02 pm

    Julie, it is so caring of you to be concerned in this way. ALS is such a complex disease, and we are learning more about it every day.<div>
    </div><div>My understanding, both as a physical therapist who worked with people with ALS, and also a caregiver for my husband, who had ALS, is that being healthy and strong is a good thing. It gives the body a better baseline, if in fact a person does develop ALS. It is possible that serious, severe over training, involving head injury, overheating, and other extreme stresses to the body, might throw a person who is already on the edge of developing ALS over that threshold. But in the case of your daughter, if she is training in a reasonable, objective, and practical way, and is not pushing through, severe, unusually difficult training, then her Running is not going to cause her to develop ALS </div>

    • Dagmar

      Member
      May 23, 2024 at 12:03 pm

      I agree.

  • Johnny5

    Member
    May 21, 2024 at 9:28 pm

    There may be something in this. The military trains hard. Football, soccer, basketball, and other sports also require hard training. Long-term physical training in some professions has been noted for higher ALS percentages. Are there any published studies on this information?

    • Dagmar

      Member
      May 23, 2024 at 12:05 pm

      I believe that because the sports figures who have ALS are so highly public, we associate their sport as having caused their condition. There have been many studies but no direct link found as of yet – – only assumptions.

      • Johnny5

        Member
        May 26, 2024 at 8:57 pm

        That could not apply to the military, but it could be so with celebrities. What other links between the different sports could tie them to the military statistics? The strain of hard training is a good possibility.

      • Dagmar

        Member
        May 27, 2024 at 3:57 pm

        The problem is that past studies looking at the risk of getting ALS via military or excessive sport exercise did not differentiate between genetic and sporadic ALS. They lumped them both into the same statistics. Genetic ALS skews the numbers.

        I think trying to pin ALS on excessive sports activity is “cherry-picking.” What about all the couch potatoes who didn’t do sports and now have ALS? Many sedentary people get it too.

      • Johnny5

        Member
        May 29, 2024 at 11:42 am

        The elevated level of physical stress experienced by the levels of training may be the trigger. The idea of sports and being a soldier is not my point. It is not the idea that sports cause ALS, but the idea of extreme stress in workouts (long term). Either way, something has to cause the elevated rate of ALS in these specific groups.

      • Johnny5

        Member
        June 25, 2024 at 3:10 pm

        I do not think they figured it out yet. Couch potatoes put stress on themselves from a lack of physical exercise, maybe? However, the elevated rate of ALS diagnosis in sports and the military is higher than that of potatoes. Traditionally, they suggest that many different things may cause ALS. ALS may not be a single condition, but many different conditions are lumped together with the same symptoms, and they need to be sorted out.

  • Funky

    Member
    May 22, 2024 at 10:54 pm

    I inherited the gene TBK1 which causes ALS and/or FTD. My mother and 3 of her 4 siblings died of FTDementia. They all lived sedentary lives whereas I was very active throughout my life with hiking, skiing, mountain climbing, and windsurfing. I have ALS. In a webinar, a researcher discussed this possibility that activity tilted the disease to ALS.

    • Dagmar

      Member
      May 23, 2024 at 12:08 pm

      I know of one study that pointed to genetic ALS being triggered by strenuous exercise. But not with sporadic. After ALS diagnosis, both genetic and sporadic benefitted from daily exercise.

  • Amanda

    Member
    May 28, 2024 at 8:45 am

    Juliez, what a good discussion topic! You will get a different answer, and different opinion from each person. However, some of the research indicates there appears to be relationship between the” practice of contact sports and ALS. Much of the research focuses on people who play contact sports and they appear to have a 76% higher chance of being diagnosed with ALS. Some of the articles speculate a correlation between repeated head and spinal cord trauma as a possible factor. This topic is a constant topic, and from what I read there are studies to support the hypothesis, and other studies that show no connection.

    <b style=”font-family: inherit; font-size: inherit; color: var(–bb-body-text-color);”>Scientific America seems to say it best. They reported , “that despite the many studies that have examined whether physical activity is tied to ALS, researchers have yet to pinpoint a clear answer. Some investigations have revealed a link, while others have not. These conflicting findings have led some researchers to examine whether other, related factors, such as metabolism or genetic predisposition, might provide alternative or complementary explanations. “Once you take this evidence all together, it looks like there is something else underlying this association rather than physical activity alone,” says Valentina Gallo, a neuro epidemiologist at the University of Groningen in the Netherlands. https://www.scientificamerican.com/article/can-intense-exercise-lead-to-als/

    Another important thing to note is that there is not one specific cause or mutation for ALS, as I’m sure we all know! What I think we are starting to see in the area of ALS linked to genetic mutations, is that there are/will be specific treatments addressing how the specific mutation impacts the body. Depending on what source you look up, there are numerous genes that can be mutated and associated with ALS (40 to 50 is what I’ve read). Additionally, each gene can have many, many mutations. In the SOD1 gene there have been at least 100 different variants identified and each mutation impacts the disease differently. In the SOD1 gene, most mutations are associated with a rapid progress. There has also been genetic mutations found in many cases of sporadic ALS. And, as Dagmar pointed out, many of the studies have not differentiated between the two types of ALS adding more confusion.

    At one time I asked my doctor how would working out or physical activity impact my chances of getting ALS (I have the SOD1 mutation). He responded, that is still unclear and an area that continues to be researched, but being healthy is always a positive. He went on to tell me that if someone is very muscular, they may likely notices the atrophy sooner/quicker. Now, a year into ALS, they encourage me to carry extra weight and to not over stress my body with physical activity. The PT said that I should be able to recover and do the same activity in two hours, if not, I overworked myself.

    As I said in the beginning, this is a great discussion question. The NIH website has some informative articles.

    If anyone makes reference to an article or study, please include a link when you can. And, remember from our tips and tricks this month, make sure the article is peer reviewed and from a scientific/medical research journal or website.


  • Fran Finney

    Member
    May 28, 2024 at 3:43 pm

    Amanda‘s answer is extremely well stated and comprehensive. I completely agree with everything she wrote. Because ALS is such a complex disease, composed of many different sub types, and also because every individual’s health and fitness level very widely, at this time, the best thing your daughter can do is to learn as much as she can, and to pay close attention to and listen to her body. If she sees or feels. changes in her recovery patterns or responses to exercise, that would be a strong indication to back off. Being healthy gives her a good baseline to deal with the onset or progression of ALS. But pushing beyond what her body will tolerate might not be so good.

    • Matthew McNee

      Member
      May 28, 2024 at 8:05 pm

      Hi, I’ve been genetically tested but haven’t got my results yet, but my grandmother and several aunties on my mums side have had alzheimers and a great uncle on the same side of the family had Parkinsons. I am an identical twin and I have had ALS for 9 years, yet my identical twin is fine. I’ve always wondered what environmental differences between me and my brother could have triggered my ALS given I think we both have some genetic predisposition to ALS. The main thing I can think of, is through my life I ran a lot more than he did which included pushing through the pain barrier for sustained lengths of time. Other than that we both had similar jobs, got married at similar times, had kids at the same time and had similar diets. I think moderate exercise is always good, but pushing through that pain barrier and sustaining it for long periods (like a marathon running) I think could be dangerous if you are genetically predisposed. At the end of the day, the reason we feel pain is our body is telling us to stop whatever we are doing as we are hurting our body.

      • Fran Finney

        Member
        May 28, 2024 at 11:05 pm

        Wow, Matthew, thank you for sharing this! Your history certainly does support the idea that if an individual is predisposed to or is vulnerable to developing ALS, it could be very important to listen to your body and not regularly push through pain when exercising or competing in athletics.

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