Old 11-01-2018, 01:07 PM #1 (permalink)
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Default It's been 3 years

This month marks 3 years since my husband was diagnosed. He is still progressing very slowly, for which I am thankful. His left hand is completely gone, his left arm is weak, and he tells me his right grip is getting weaker. He can still walk, talk, and eat. My caregiving role is currently limited to helping him dress, tying his shoes, and cutting meat, not to mention trying to keep his (and my) spirits up. That is a challenge with ALS as all of us know. We have been lucky enough to do a little traveling and have done some wonderful things together.

He is concerned that exercise may hasten his progression; it is a fine line between trying to get enjoyment out of life and not doing things that may be harmful. He is fatigued a lot and says exercise tends to wipe him out. He also has pinned a lot of hope on the Brainstorm trial; I'm cautious about it as so many things have been tried and failed.

I have so appreciated being on this forum for the support and help. In many cases you all have helped me sort out the best course of action as we go forward. My heart breaks for everyone here, but I'm so grateful to everyone.

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Old 11-01-2018, 01:24 PM #2 (permalink)
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Default Re: It's been 3 years

I was told by the ALS clinic to not do strengthening exercises on muscles that had already been impacted. I am continuing stretching exercises. There is some differing opinions on the strengthening exercises, but I am choosing to follow the Clinic’s recommendations.
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Old 11-08-2018, 07:15 AM #3 (permalink)
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Default Re: It's been 3 years

Gosh, we went thru a horrible period where a PT had Kathy doing isometric strengthening exercises, and they were exhausting. We realized that to regain her strength would actually take a miracle so we cancelled the therapy. I don’t think there’s any benefit to extra exercise, but definitely many benefits to staying active as long as he can. As far as it hastening the disease, since it’s happening in the mitochondria and not in the muscles, I don’t see how it would speed up progression.

You may already know that poor respiration can also cause fatigue, so be sure his blood gasses are normal-ish.
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Old 11-08-2018, 01:25 PM #4 (permalink)
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Default Re: It's been 3 years

Jen this is how it speeds progression.
Resistance exercise causes micro tears in the muscles. The repair of these micro tears causes an influx of muscle tissue and so the muscle mass increases with each repair. This is how we normally build muscles up.

A PALS does not have that same response and micro tears do not heal or heal poorly and the muscle can in fact waste faster as a result.

Hope that makes sense, it is meant in layman terms.
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Old 11-08-2018, 02:31 PM #5 (permalink)
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Default Re: It's been 3 years

Yes, as I lay in bed last night I thought, “you don’t really know what you’re talking about. Better correct that in the AM!”

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Old 11-08-2018, 05:31 PM #6 (permalink)
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Default Re: It's been 3 years

Jen but you helped get it explained out again so it was good!
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