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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.

    Dagmar replied 15 hours, 7 minutes ago 5 Members · 6 Replies
  • 6 Replies
  • Fran Finney

    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

      May 23, 2024 at 12:03 pm

      I agree.

  • Johnny5

    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

      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.

  • Funky

    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

      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.

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