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ShiftKicker

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Joined
Mar 16, 2015
Messages
8,334
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
I've read conflicting views and been given different advice about exercise. I have gone from playing a pretty serious sport and practicing up 15 hours weekly to...walking (I use that term loosely) slowly to the store three blocks away and back. ANY effort triggers and increases spasticity and cramps, and the grinding fatigue and muscle aches/weakness set me back for days. However, I can't let go the idea that exercise should help. I defer to the experience of the group at large- does exercise speed progress up? Should I just suck it up and keep trying because it slows progress? In my search on the forum and elsewhere, I've seen both exercise and taking it easy recommended. I already do rom stuff, but it has to be passive or all my strings get wound up tight.
 
The jury is still out on this but I think everyone would agree that pushing yourself is bad. The guideline I was given was if you do not return to baseline within an hour you did too much. Certainly something that takes days to recover from is not good. I am fairly certain that my 2 episodes of fairly sudden progression were at least in part due to too strenuous exercise ( and I thought I was taking it easy)
Our muscles can't repair themselves as they used to so that pleasant feeling of soreness after a good workout? Very bad!
A lot of people find water workouts the answer. I know others who can do yoga or tai chi. Yoga was very bad for me from the beginning even though historically I have done yoga including the very strenuous ashtanga form. Exercise bike worked for me for a while
ROM is of course important but beyond that use caution. With ALS you can't rebuild muscle
 
I should add what I said applies to ALS. I believe people with PLS are encouraged to do more - but still exhausting yourself can not be good
 
Nikki, you are right. That use it or lose it thing. Progression is alive and kicking at my house, but I use my hand as best I can until it just won't.
I'm finding i have to wear that damn AFO more often, especially at home, as my ankle has no movement now. Very aware of rule #1, and near misses freak me out.
J x
 
I get tired fast but I get up and walk around my house repeatedly through the day, I feel like it helps and will continue doing it as long as I can....
 
There are two kinds of muscle contractions. When you're pulling the dumbbell up with your hand, that is a con centric muscle contraction. When you lower the weight slowly that is an eccentric muscle contraction. It is those latter muscle contractions that cause the micro tears that build muscle. I think it's fair to assume an ALS that the micro tears might not be healed. The only exercise that does not have eccentric muscle contractions is in the water. I taught challenge water aerobics for years. Several years into diagnosis, I was still doing water aerobics. When it took a long time to recover I knew I was overdoing it. It's really hard to not be the hardcharging broad I've always been. The last time I over did it I fell and broke a bone in my ankle.
 
>Exercise- yes or no?

no, rom yes, but conserve what you have. lose it, it's gone :-(
 
>Exercise- yes or no?

My neuro's PA said exercise, but only until you feel fatigue. And it doesn't matter what the "exercise" is. If you're walking 100 feet and you get tired after 50 feet, stop, sit or lean against a wall; just don't push yourself past fatigue. That is when you are risking death to the motor neuron.

And on that, I read that the most "at risk" neurons are the ones in large MUPS because that motor neuron is innervating way more muscle cells than it was designed to do. And if it dies, you will lose innervation of more muscles than just losing a regular motor neuron.

So, protect your MUPS (and all motor neurons) by not overstressing them.

My vote: Exercise in pool, but even there, don't overdo it.
 
Depending on your rate of decline shitKicker. If you are still walking around doing things in a semi-normal fashion, I say use it or lose it faster with inactivity.
My balance and progressive weakness are starting to kick my a$$, but I still strive for 30 minutes of light cardio and weights 3 times per week. I am not saying to sprint or do powerlifting ...but sets where you can do 12-15 reps are not gunna hurt you. Also for cardio use things you can hang on to, like and Airdyne or treadmill. And do your resistance exercises seated, the only thing I do standing is barbell curls, because it is a good core strengthener as well.
I am injured from a fall right now, but will still do my cardio until I heal. Excercise and activity are the only reason I am still semi-mobile.
 
My daily swims keep me going. 45 minutes of light aerobics or even just hanging on a noodle feel great. Also enjoy standing up and walking in the pool. It feels so good to move my arms and legs freely - something that's not happening on land anymore.
 
I agree and glad to see that you're in the pool. I think one of the reasons my breathing is still so good is that water aerobics strengthens the diaphragm. It has to push off against all that water.
 
Thank you for all your advice.
The information about ecentric exercise is of particular interest to me. When I was an athlete, this was a large part of my routine. More bang for your buck, as my pt used to say. It makes sense that I do not want more bang any more, just a boost.
Unfortunately, my fatigue is so grinding, I have no sense of what point to stop because I'm fatigued before I even start. I would love to push past this to get any form of exercise, but lack the ability to differentiate between what is "just plain fatigue" and what may be "Stop! Damage!". I will take my pasty self to the swimming pool and get overtaken in the slow lane by the recovering heart patients, and then reward myself with the hot tub.
 
For me I can differentiate between body fatigue and my affected muscles being overstressed. Yes I am tired and it is a kind of struggle but it is a different thing when my affected muscles say enough. This probably gets harder the more areas and the more muscles affected but you presumably have information on which muscles are affected since you are just diagnosed? Maybe focus on how they and the immediately surrounding ones handle the stress of activity? Hope this makes sense?
 
For me there is a huge difference between my "normal" daily fatigue and the kind I get from over doing. The latter puts me in bed for a day. Normal is I can rest for an hour or so and keep functioning
 
Lingo gives me the whoops, but I'm pretty sure it's passive exercise you get from using a rocking chair. My best friend told me about it. There was a write up in the paper about it. As leaving the house requires me to actually get dressed (I mean the damn boot) I'm going for a rocking chair.

I agree azgirl, that's a very good description of both types.

J x
 
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