Exercise as a risk factor for C9 ALS

AniSk

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I came across this article regarding exercise and risk of earlier onset for those with C9 gene. My dad had C9 ALS and we are both runners. We trained and ran NYC marathon together in 2004. When he was diagnosed in 2017 we were running together again but shorter distances. My family and I first became concerned when we noticed that he was taking significantly longer to finish each race. He was diagnosed at 70 and passed at 72. This is consistent with his father and sister and other family members who were both late 60s to 70s. They did not exercise to the extent that he did. I’m trying to decide if, for my own risk, it’s worth keeping the study in mind.

Daily exercise, Especially biking and running, has been such a reprieve for me. It helps my anxiety and ADHD and also keeps me feeling connected to some thing my dad and I enjoyed together. I’d like to take advantage of what my body can do, while I can still do it.

I’m curious to see what others, who may be in a similar situation, think about this. Thank you!

Lancet paper
 
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Nikki J

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This is being discussed extensively in the FALS community. Even before this I know some FALS experts were advising known carriers against extreme exercise like marathons.

do you know your genetic status? Since this is actionable some are considering finding out. If this had been known earlier ( and c9 discovered so I could test) I would have changed my exercise routine - not eliminated it but dialed down intensity
 

AniSk

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No, I haven’t found out my status. I’m participating in the ALS family project at Columbia, since my dad was confirmed positive, and would be able to test through them if I wish to, but haven’t yet been able to make that decision. I most likely will test if and when preventative trials do come out- or if more is conclusive regarding preventing or delaying onset.
 

howdoug

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I do not have familial ALS to be clear but I thought you might be interested in my story. I was diagnosed with ALS back on Jan 8, 2001. At that time they gave me 2-5 years to live. After about 2 years I progressed to a quadriplegic. I did notice that I still could adduct my legs and my arms especially when I spasmed. Since I figured I was soon going to die anyway I had a couple people take me to a warm pool and I did what I could do regardless. This was every other day. After about 2 weeks we started to see improvement in strength especially in my ability to breath and talk. Since then we have found out I have upper motor neuron ALS, and exercise is what is keeping me alive. Yes I'm a quad, but pool exercise is keeping me breathing.
 

AniSk

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Wow, amazing that exercise in the pool has
done that for you!

This study seems to suggest a risk in strenuous exercise only for those with FALS as a result of the C9 gene. But it’s great to hear a story of something you did for enjoyment that ended up leading to your improvement!
 

SpeedyMarie

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There is going to be a talk about this 7/28/21 through the ALS TDI ALS Town Hall. <link to page soliciting donations removed>
 
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Nikki J

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Spoiler alert:

Professor Cooper- Knock presented to another group last week. Summary intense exercise is probably a risk factor for some people and may be a factor for some c9 people but they don’t know how big an effect or if it is all c9 people and they do not recommend any change in exercise patterns at this time. They want to do a larger c9 study and will be putting out more information on that soon.

of course the problem is if you are a carrier right now it is all very well to say we don’t know yet so carry on for now but what if they come back in a couple of years and say oh it is dangerous and you had kept exercising? Or you stopped and they say oops it is fine?
 

AniSk

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I did attend that presentation. It actually did reassure me to some degree, knowing that continuing to exercise isn’t going to definitively cause earlier onset. Although it is frustrating to see yet another study that is not yet conclusive/ needs replication/ needs to identify many other potential variables.
 

Elizjeffords

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Hi, I’m new.
I have been doing a lot of reading since the Lancet paper first hit the news. It actually was the exact reason why I was tested for c9 (positive). My understanding is that the specific form of exertion implicated is anaerobic burst activity. Any kind of aerobic activity can certainly be intense, but anaerobic work, which is about depriving the muscles of oxygen, is difficult to achieve without concerted training. In my sport, rowing, that level of work only happens in training for competition, and racing. I plan to continue rowing, albeit in the non-competitive boats, and really any other of the physical activities I enjoy, confident that I am able to avoid the intensity that the researchers were discussing.
 

AniSk

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@Elizjeffords The concern about exercise is one of the reasons that I am now planning to be tested as well. Although Dr. Harms at Columbia as well as the author of the paper both say that it was a small sample size and not conclusive enough to make recommendations at this point.
 
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