How to gauge exercise?

Michael_67

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Hi everybody,
I had a question for folks about the complex issue of exercise. I’ve been given the general advice to exercise moderately, not too much or too little. But I’m having trouble knowing how best to gauge that? What signs or benchmarks do people use to gauge if they are exercising too much or too little? Are more frequent muscle cramps a sign of overexertion? I’ve been getting more leg and hand cramps recently, but can’t tell if they are a sign of overexertion, underexertion, or just the nature of progressive ALS. Any ideas greatly appreciated. I hope you are all having a relaxing holiday season!
 

Nikki J

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The guideline I was given at my clinic ( Mass General) is that if it takes more than one hour to recover fully it was too much. Obviously there is a bit of trial and error to figure out what that point would be and the point will change, unfortunately, with progression.

the old advice of range of motion only has been generally discounted and some exercise is usually considered ok as you were told. There was a study published a couple of years ago comparing ROM, aerobic exercise and resistance training. The latter two groups had slightly fewer falls if I remember correctly and nothing bad happened that was attributed to exercise. However the participants were very carefully monitored and the resistance group had the weight prescribed and readjusted frequently for progression. The aerobic part was a pedal cycle

water exercise works well for many PALS if you can access a pool
 

KarenNWendyn

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If cramping increases after exercise, then it was too much. If you notice things are more difficult to do at least an hour after exercise, it was too much.

I saw a clueless PT after being diagnosed, and he gave me resistance exercises for my hands and ankles because I had failure in those areas and he wanted me to build strength. Don’t let anyone tell you that!. It was obvious to me that this was bad after my ankles and fingers started cramping immediately. Instead (early in my course), I did ROM, yoga, light aerobics (walking and stationary bike). I also found that some balance exercises were helpful when I could still do them, such as standing in a doorway on one foot and grabbing the door frame when I needed to. More recently— standing on both legs in front of my wheelchair with the walker in front of me if I needed to grab on to something.

For a long while, I walked on a treadmill. The speed and time eventually got less and less. When I got off the treadmill and noticed it was harder to walk, my treadmilling days were over (that was over a year ago). Subsequently I had a PT give me a program of ROM exercises I could do in a pool.
 

Michael_67

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Thank you Nikki and Karen! These are clear guidelines with specific examples. Better than I got at my clinic. So thank you!
 

Jay Q

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Michael, when diagnosed over three years ago I was a fairly active 48 year old who played tennis and golf and went to the gym 3-4 days per week. In those initial months my only limitations were left hand /grip weakness and left foot drop. So, I could still be active at the gym and was probably too aggressive in trying to maintain the muscle mass I had. Over time I learned to moderate. My gym visits persisted for about a year before I gave up due to progression in rest of limbs. For me, now and for the last year, it's all about range of motion. I am largely chair bound and have been for about a year..

Having seen untold numbers of health care professionals, including PTs, for various health issues related to ALS, it is repeatedly disappointing how many don't have a clue about this disease. So, you're absolutely right to inquire.

Hope this helps.
 

Jimi

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I think this is a very controversial topic. I had a few pt's that worked for the Als clinic tell me not to do much exercise and just conserve my energy, some of them even felt if you over worked yourself that you might not recover fully. My doctor gave me the typical disclaimer of don't over do it, but also said that there was no conclusive evidence for or against. I asked him if he thought I would damage my existing motor neurons by exercise and he didn't think so. So as a life long weight lifter, I continued to go to the gym. Cane, walker, wheelchair, and finally I was too weak. It never hurt or wore me out really, but didn't seem to make a dent in my progression. Things just steadily decline with me. My feeling is that it didn't help my body much, but definitely didn't harm it either. Perhaps the benefit was that exercise is a natural antidepressant.... At least that is a proven fact
 

Nikki J

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Here is a link to an archived webinar about exercise. The presenter is a PT at my clinic. She was one of the people involved in the multicenter exercise study I referenced ALS and exercise webinar
 

Jay Q

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i agree with Jimi, that it appears there is no definitive answer re exercise,. I also whole heartedly agree that if exercise brought you improved mental satisfaction pre-ALS, then by all means continue in some fashion as long as you are safe and comfortable. I know I miss it.
 

MarieLaure

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Hi all
M’y five cents : I tend to agree that the satisfaction you can get out of exercise as long as it doesn’t take ages to recover from it can be worth it. My dad has always been very much into sports and now that he can only move his head ( just a bit) he still enjoys doing “gym” which is rom basically now. It makes him feel good.
To add an anecdote: a few years ago when he could still walk but not use his hands or arms he took part in a local trial. It was about evaluating the effects of exercise on people with various diseases. He said that he was in a group where some people still had their arms and others still had their legs. They discussed which was worse. Well the result was that those who couldn’t use their legs thought not having control over their arms was worse and those who who could walk thought not being able to use their legs was worse.
the anecdote is a bit off topic.
hope you can all find was suits you and makes you feel good
 

KarenNWendyn

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He said that he was in a group where some people still had their arms and others still had their legs. They discussed which was worse. Well the result was that those who couldn’t use their legs thought not having control over their arms was worse and those who who could walk thought not being able to use their legs was worse.
Wow, I’ve often wondered the same. That’s fascinating.
 

KimT

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Pain stops me from exercising. When my pain level was lower, it felt good to walk on the treadmill or around the track. The pool was wonderful when it was warm out and the water temperature was 90. I try to move around the condo often. I probably get up at least 30 times a day and move from one room to another. I walk down with the garbage and recycle and I walk around the grocery store using the card as my walker.

For me, the benefit of movement and exercise far outweighed the recovery time thing. Even now, when I go outside, having the sun on my face lifts me up. Going in the pool was the best therapy I found. Hoping I can still do it this Summer.
 
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