This is a question that I also have wondered about. I read that people with als should conserve their energy, but I wonder if building some muscle early on in the disease is helpful or hurtful. My rheumatologist has ordered aqua PT and I am wondering if I should go through with it before my neuro finds out what is going on. I have not read that less activity slows progression, only conserves energy, but maybe somebody on the forum has a clear answer. Leslie
I have seen both sides of this question argued vociferously for the past 6 years. In a study of SOD-1 mice it was shown that mice that worked out on a wheel did better than those deprived of the wheel. Sorry I don't have the reference but you might Google it. I'm with the mice on the tread-wheel and do as much (with overtiring myself) as I can. Right now I am far from home for 2 1/2 months and didn't bring my walker. I feel I have lost more of my walking ability in the past month than I normally do. Anecdotal I know.
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.
The told my husband at Emory in Atlanta that it was ok to walk and swim but not try to work out at the gym to build muscles because it tears muscles down first and with a muscle disease you might not be able to build back up. Also to do the walking and swimming within reason - don't overtire yourself. Hope this helps.
I think the key is to avoid muscle fatigue - definately avoid the "no pain no gain" attitude.
Aim for moderate low impact activity - and always do range of motion stretches.
I used to be an active swimmer - but it's tough for me to do the front crawl now (heck eating a bowl of soup can be exhausting now)
Before tne snow and ice hit - I was still biking into work a few times a week - and that's 47 kms (30 miles) round trip - but sometimes afterwards my legs would twitch - which freaks me out - as there is as of yet no apparant weakness in my legs (my arm muscles twitch like mexican jumping beans).
It is interesting to note that many PALS are (or were) very active people.
Aren't you the guy who posted about riding a recumbent bike awhile back? Reading your old threads really helped me pick my butt up and get back in the pool around the time I was diagnosed and figured "why bother". Thanks. :-D
I'd just like to reinforce for all your comments about stretching and range of motion exercises. I start with a routine in the shower in the a.m and take stretching breaks at work 2 - 3 x a day then another round in the evening. Nothing fancy - just keep loose.
It is VERY interesting to me that a lot of people with ALS are or have been very active. Mike certainly was. There's a guy, Jon Blazeman, who in 2005 finished the Hawaii Ironman Triathlon after being diagnosed with ALS. That's a 2.4 mile swim, 112 mile bike ride and 26.2 mile run. He has started a foundation to raise ALS awareness and fund research, and is assembling triathletes to join Team Blazeman. I'm a triathlete (but certainly nowhere near an ironman triathlete!), and have joined that team in Mike's memory...and now in honor of all of you, too. Check out Jon's website if you want: www.waronals.com. Sharon
My 2 cents worth or 1.7 cents US. Swimming is good because the muscles are exercised with out the full weight of the body being on them as in jogging. I have noticed that my right hand has lost strength faster than my left. I am right handed and thus have used it more. I think it has broken down quicker due to more use. Just an observation but it makes sense to me.