Unread 08-16-2011, 02:22 PM #1 (permalink)
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Default Exercise and ALS

Hi all - I have a question. I'm in the very early stages of this disease, and my life prior to this consisted of weightlifting, running, etc. In fact it, i think it was why i was able to catch it so early - I still have no strength loss in my day to day activities but when lifting heavy weights I really notice it. If not for that I might still be undiagnosed.

Anyway, to my question. I've seen some mixed opinions on whether excersise can accelerate muscle degeneration. The doctors I've seen have said to exercise in moderation and stop if I feel overworked, but it's really hard to know those limits since all my previous exercise routines have been performed to exhaustion anyway. He added that a benefit would be strenthening the muscles around the affected muscles, as they would need to play a bigger role.

I want to stay as functional as I can for as long as I can, and I don't want lifting weights to hurt that. I can still perform very vigorous workouts, but I wonder if it's doing more hard than good.

Thanks!
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Unread 08-16-2011, 03:16 PM #2 (permalink)
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Default Re: Exercise and ALS

I think what the doctors have told you is true,i was diagnosed aug 2010,am 68 and like you was busy working out,weights and treadmil was my game.today i have my pwc and handicapped van,can hardley walk at all.i gave up all workouts nov.2010,i have the bulbar onset.the name of the game now is to enjoy life to the max while you can,take that cruise,tour the world,we all progress different,nobody knows.sorry your here and i wish you the best-----------good luck----ken
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Unread 08-16-2011, 04:01 PM #3 (permalink)
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Default Re: Exercise and ALS

I used to climb/hike mountains, ski, Zoomba a year ago, and do none of that now. I think my last intense hike did some permanent damage. Walking is difficult anymore. I do walk though, I just don't push myself too much. It would be harmful to work yourself to exhaustion from what one of my diagnosing Neuros said. Your good muscles might not recover. And once they're gone, they're gone for good.
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Unread 08-16-2011, 04:07 PM #4 (permalink)
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Default Re: Exercise and ALS

I agree with Ms. Pie. My husband was told the same thing. He was huge from weightlifting and was even stuck in a roller coaster one time, because his shoulders and arms were so big. His arms were the first to go, so we aren't sure if his weightlifting to exhaustion caused them to deteriorate faster. No one knows. The name of the game now is to enjoy what you like to do in moderation and maybe not to exhaustion.

Good luck to you!
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Unread 08-16-2011, 07:51 PM #5 (permalink)
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Default Re: Exercise and ALS

My husband was just active - he was always doing something which walking was a major part of everything he did. Never sat still for 10 minutes. Firefighting was his passion and swinging that gigantic axe. He has lost the use of his legs. The one thing he loved the most and he can no longer do it. Excercising (minimal) is good but do not over do it as everyone else has stated. Ed is also losing the use of his arms slowly but we know that it is happening. Enjoy the time you have, we really thought that in our retirement years we were going to travel. Our traveling is Cruising, for as long as we can do it.
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Unread 08-16-2011, 08:15 PM #6 (permalink)
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Default Re: Exercise and ALS

The way it was explained to me by the medicos is that weight lifting (which I enjoy) breaks down muscle tissue. The problem with PALS is that proper nutrition for muscle repair fails to go to the muscles which are somewhat depleted by weight lifting. I have been off weight lifting for eight months now and am getting somewhat flabby. However, I abide by the medicos advice. Let's hear from others in this situation ! ! !
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Unread 08-16-2011, 08:24 PM #7 (permalink)
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Default Re: Exercise and ALS

The "If you don't use it you lose it" just does NOT apply to PALS. I have been told swimming is the best exercise.
Secret to Longevity



Pool/hydro therapy


To Exercise or Not to Excercise

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Unread 08-16-2011, 08:58 PM #8 (permalink)
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Default Re: Exercise and ALS

My PALS swims 3 times a week, and will do so as long as he can. He also uses a little bit of weight machine exercise, but at far lower weights than previously. It is really for just keeping the muscles moving and for keeping his range of motion.

His doc agrees with this regimen until he has progressed further and actually loses most of his muscles ability to work.

He has gained about 10 pounds in the since his diagnosis last Nov, but the doc says that is good. It is better to be a little overweight, than underweight going into this disease!
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Unread 08-16-2011, 10:53 PM #9 (permalink)
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Default Re: Exercise and ALS

We stick with stretching--keeping everything moving is more important than buff! LOL
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Unread 08-17-2011, 11:57 AM #10 (permalink)
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Default Re: Exercise and ALS

I agree, do what you enjoy, as long as it does not totally exhaust your muscles. I enjoyed working out, however, I can no longer do heavy weights or the treadmill. I pretty much just go through the routine and range of motion of the various exercises with very light weights. I feel this still keeps me active to some sort of degree and its what I enjoy doing.
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Unread 08-21-2011, 04:37 PM #11 (permalink)
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Default Re: Exercise and ALS

Yup--what everyone else said. Don't work out to the point of exhaustion. With ALS, the system just isn't there to make the repairs needed if you overdo it.

Enjoy what you can while you can. Just because you can still bench press 200 lbs doesn't mean it's what you should be doing, for instance. There are multiple ways to exercise that won't cause further damage to muscles. Water therapy is great--provides the resistance, but also allows for full-body workouts.

While you feel good--do the things you've always wanted to do. I love the song (don't know who sings it) but the title is "Live like you were dying"

It's my life philosophy now--combined with "Pay it forward".
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Unread 08-21-2011, 05:17 PM #12 (permalink)
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Default Re: Exercise and ALS

Notme..it's Tim McGraw. That song rips my heart every time I hear it. Because of his dementia, Glen was unable to do that.

As far as lifting weights... are we talking machine or free weights. If it's free weights, no matter what weight you're lifting PLEASE do not lift without a spotter. ALS will make your muscles unpredictable. For most, the result is unexpected falls. But if you're lifting free weights without a spotter and something goes in your arm... well... just don't do it, ok?
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Unread 08-22-2011, 12:58 AM #13 (permalink)
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Default Re: Exercise and ALS

It is a great song!


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Unread 08-22-2011, 01:02 PM #14 (permalink)
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Default Re: Exercise and ALS

Hi Shank,
Are you taking Creatine?
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