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liva

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Hello

I am wondering, how much should I exercise? I have been told to stop my exercise with the first sign of tiredness. At the same time I feel I won't be adding any muscles this way. If my muscles don't get tired during exercise they don't basically start regenerating. In other words my exercise doesn't actually do much for me.

At the moment I can lift a 5 kg weight and I lift it for 5 reps and with the first sign of pain or tiredness I let go of it. Is this a right way of doing it? Or do I have to put a little pressure on myself?

Regards
A
 
There are different schools of thought about ALS and exercise.

For a while it was thought exercise should be limited - as it releases free radicals and all that junk.

Now I think most doctors are recommending exercise as a good thing.

Of course you must understand that there is nothing you can do to regain or regenerate muscle that has atrophied as a result of ALS. For those limbs affected by ALS, range of motion exercises are key in order to retain flexibility.

For those limbs unaffected by ALS, you can exercise as you would normally. My legs have, until now, been unaffected and I have been able to increase muscles mass in those areas since diagnosis.

My arms were the first areas affected and after I was diagnosed I exercised them like crazy: push ups, rowing machine, resistance straps, swimming. I don't think it made any difference or helped but I don't think it did any harm either.

It does seem that many PALS were formerly very active individuals. I also note that the areas first affected in my case were the muscles I used most often starting in my right hand.

At the end of the day, my philosophy has been been "I do what I want to do". I never force myself to exercise anymore as I used to prior to diagnosis.

If I feel like I want to exercise - I do. If I don't - I don't.

And I try and focus on things that I will miss most when I become paralysed. I don't think I'll regret not doing those 30 reps - but I will definitely regret not taking advantage of a beautiful day and getting out to walk or ride my bike.
 
I agree, I think moderate exercise is always a good thing. More importantly, get out and do the things you like to do as much as you can while you still can.
 
I was told moderate exercise is good, and when I asked "how moderate?" was given this guidance: an hour after you exercise, you should feel like you could do it again. Everyone's different-- for example I was using 5#weights for my bicep curls in Dec., and now can only manage 3# on my right arm and maybe 2# on my left.
And if the sun would ever come out, I'd get out and enjoy a walk- very slowly!- as suggested.
Good luck!
Sue
 
liva,

Are you speaking for someone who has ALS or are you the one who has ALS? I thought you were undiagnosed and looking for recommendations on places to go to get diagnosed.
 
I try ten minutes of exercise a day...whatever exercise I think I can honestly do. Sometimes its arms, other time core or legs. I actually used to be extremely active...dancer for 20 years so it was first hard to see my atrophy since I had such big muscles from dance to begin with. Now though it is obvious as I have lost inches...yes...inches of measurement for my calfs and quads. Of course some of it is because I had to stop most dance because of being unable to balance while standing... but fasciulations/twitching/and atrophy took the rest. Overall, its up to you. But if I have a choice to take a long slow rickedy walk around my cul-de-sac and smell the flowers or spend 10 min. inside trying to get back muscle that won't come back doing reps ...I will always choose the walk :)
Kell Bell
 
HI, thank you everyone for the replies. To quickly address some points;

I am not diagnosed, it is in fact my fiance' who has been having symptoms similar to ALS, we have been to several doctors and yet it is not positively diagnosed.

What is for sure is that she has some sort of MND. She starting loosing muscles and at some point even hair. Furthermore she also developed symptoms similar to MMN. While we are waiting for another set of tests to happen real soon, we don't want her to get off exercise.

One more point about her conditions is that even though she initially lost her muscles and her motor skills, she started gaining it back. At some point she had serious trouble walking or holding a cup of tea. Now she can walk up to about 5km per hour speed and she can lift a 5kg weight with her hands(each).

So, as I think everyone agrees, this whole thing is such weird thing and it may take years before any proper diagnosis is executed.


In the meantime, I am not sure what sort of exercises she should go under. When she goes to gym, specially when I am with her, I try to push her as much as I can and in fact she gets to run faster and exercise harder. But I am not sue if this is in fact good for her or not.

So, given her conditions and the fact that she is re-gaining her muscles, I m trying to find the right course of exercise for her.

Thanks again
 
If your fiancé is gaining strength and improving, then I think you are searching for your answers in the wrong place.ALS does not get better. Once strength is lost, it stays that way. Progresses relentlessly.

In most neurological illnesses, excersise is good in moderation. Your fiancé will know when to stop. Don't push her, its not your job.when her muscles say enough then she should stop. You really should be asking her physician these questions, especially while no diagnosis has been made.
 
Hi Alyoop


My fiance' is not positively diagnosed for anything, similar symptoms to ALS, MMN and some others :(. That is currently the problem we have, we can't be sure what is wrong. That's why I am here on this forum, assuming the worst case scenario.

Speaking of her physician, much as he is an extremely supportive gentleman, he yet doesn't know much about ALS. His knowledge is probably same he studies in med school and as you can possibly imagine there isn't many 'proper' hospitals around here anyway. So it's left up to us studying and researching the net for answers.



You mentioned something about her muscles saying enough. How can I be sure when that is, I am assuming it is very similar to myself working out. I could stop running after 10 minutes at 12km per hour but then I can also push myself to 12 minutes. or i can boost up the gradient. A good night sleep and I won't feel any pain. I am not sure how can I measure it, for her or even myself.

any suggestions?

Thanks
A
 
I just feel so much better when I exercise.

I have found that I can build strength and stamina in non-atrophied areas and it just really helps my attitude to see some actual improvement.

There are always temporary setbacks that seem to creep in; falls, bronchitis and all the other things that plague our lives. But, generally I am a fan of do what you can while you can. If nothing else it helps your outlook.
 
While I'm waiting for a diagnosis--I was told to only do what I could do that didn't tire me. To be honest--if she can now do things that she couldn't do before--as she said--it's not ALS.

ALS gets progressively WORSE. Once a muscle is lost--it's lost forever. You posted they were sure it was some MND--how are they sure it's MND at all?

In my opinion, such as it is--you shouldn't be pushing her at all. And, to be blunt--it's not up to you to decide what she can and can't physically do. her DOCTOR should be telling her what to do based on their testing and information.

Trying to push her to do more than she can easily do can make her symptoms worse--not better.

On the other hand--if she's getting better with no treatment at all but exercise--it sounds very unlikely that ALS is the problem at all.
 
Notme:

No one is "pushing" anything here....go back and re-read this thread.
We have simply shared our own experiences.
 
BB: I beleice Notme is referrimg 2 post #7, whjere Liva startes hje tries 2 pushj her 2 do more! & as I read thje othre posts, I read thjem as U stated: shjarimg UR owm expreiemces.
 
BB: I beleice Notme is referrimg 2 post #7, whjere Liva startes hje tries 2 pushj her 2 do more! & as I read thje othre posts, I read thjem as U stated: shjarimg UR owm expreiemces.

Yes, mom, I was. Those here with ALS have always given what I've found to be very sound advice--you included, Bad Balance.

In the meantime, I am not sure what sort of exercises she should go under. When she goes to gym, specially when I am with her, I try to push her as much as I can and in fact she gets to run faster and exercise harder. But I am not sue if this is in fact good for her or not.

My comments were based on the above bit from the original poster. (Bold added by me)

It seems a natural thing for some loved ones to try to 'fix' someone with whatever theory they happen to believe in. My main point was the doctor should be the one determining what needed to be done--not the fiance. Sorry I offended you, BB
 
Thanks for clarifying...appreciate it.

-Jerry
 
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