Hi ptich -
This is confusing for me - what is the right thing to do? I was working out regularly and vigorously (swimming) during the 2 years from start of symptoms until diagnosis. Did this slow progression - who knows? My docs say it is good if I continue but I have cut back a little on the intensity of my swims. I still feel great in the water and I can't feel it doing any harm (or good for that matter) so I keep going. It seems a shame to me to give up good muscle before it is ready to go so staying strong seems to make sense. I don't want to atrophy from disuse plus it is good for the heart/lungs. But how will I know when it switches from keeping good muscle strong over to wearing out muscle that is starting to go? Am guessing my body will give me another one of those "in your face" ALS signs when it's time. Ironically, it is activities required to get to the swim that cause me trouble - for example, it is hard to get a Speedo on with weak, atrophied hands. :-
What I have heard is that if you find something increasingly difficult to do (stairs, for example) then try to do less of that. For me so far that has been more along the lines of fine motor activity - gave up needlework very early, now starting to use voice recognition software to cut down on keyboarding, doing less cooking (find preparing a meal more tiring than swimming a mile - weird, huh?).
I don't know if the specialists have come to any consensus on this issue. When I tried to research it I came away with much conflicting info.
Liz