What do you do for exercise?

[lucash]

I know we all say it, but i cant emphasize enough about the "overdo" exercise. Back in -Jan 2013 my wife was still walking and could do some small arm movements. We listen to someone that had a very intensive training plan for her (he had success with that plan with people with different diseases, not ALS) and went with him, at first she had some muscle improvements but shortly after he begun getting extremely tired and if one day she could get up from the couch by herself after the day after the exercise she couldn`t. When we finally understood it was causing more damage than good it was too late (Oct-Nov 2013), she ended the year on wheelchair and without arm movement. It would happen eventually, but i am now 100 % sure that the intensive exercise clearly accelerated it...besides during that year we almost didn`t do anything while she still could because we were either on the gym or the day after recovering (she went Mon Wed & Fri), terrible idea which we regret so much. So watch out to your recovery period, if it`s more than a couple of hours, then drop it or scale it back.
Hope this helps
Saludos
Lucas

 

[bigmark1954]

We all have opinions about exercise and what is correct for PALS. I respect all opinions because we all have something in common with MND.

That being said...we are all so different in how this disease affects us, and how we react in terms of how we manifest ALS/PLS.

Personally, I have found way to defeat my progression of this MONSTER thru exercise. Perhaps it is purely psychological as to how I piss in the face of ALS. Denial is not a river in Africa.

So we are all correct in how we act toward our journey, and almost none of us react to anything the same.

I hope nobody is offended by this, but no one is an expert on all things (except me). I am going to crawl under my rock now, because this post gave me a headache!

 

[John1]

"I have a theory ( mine only - large grain of salt) that those with upper motor neuron dominant ALS fare better with the higher levels of exercise".

Interesting idea Nikki. I am UMN dominant with very few fasciculations. I have a recumbent exercise bike that I use a few times a week for about 10 minutes - 5 minutes cycling on minimum resistance and 5 minutes rowing, also on minimum resistance. This year my wife raised it up about 10" off the floor as I was finding it too difficult to get up from it back to my scooter.

I have received a full range of opinions on the merits of exercise from my professional support staff. From "go for it" to best to abstain because it will speed up muscle loss. I based my decision on some mouse studies that showed moderate life extension with using a running wheel. One of my doctors said "we're not mice". I think for me it has been beneficial but I exercise in moderation and think it also helps with my range of motion. Your UMN vs LMN idea might explain the discrepancy of results.

 

[KW1234]

Thank you all for your insight. Unfortunately I am affected all over... bulbar, upper, lower, and thoracic area. My regular PT is trying to figure out how best to work with me... in the meantime I am keeping this to 3x a week. I have cut back a bit on the swimming. On Wednesday I aspirated some pool water and started croaking like a sick frog which started to freak out a couple other people. I am finding it hard to cough.. like those muscles are just not working any more and I am petrified of getting a cold now- I have asthma as well and am no stranger to pneumonia. I see the pulmonary people on thursday.

 

[affected]

KW we are talking about upper or lower motor neurones, not limbs.

Upper motor neurones (UMN) are the motor neurones that go from the brain to the spinal cord.

Lower motor neurones (LMN) go from the spinal cord to the muscles.

ALS involves both, but some PALS are definitely upper or lower dominant.

Maybe ask your PT to talk to a PT at your ALS clinic and share information?

 

[Nikki J]

John thanks for chiming in. The exercise thing is so important and the uncertainty of what will happen is frightening. For those of us who have bad and permanent consequences by the time we find out it is too late. If it were predictable by phenotype it would make things so much easier. And nice to hear from you!!

 

[azgirl]

Kw, there are so many exercises that you can do in the pool for in your arms and legs without putting your head d under. It's not as satisfying as going out and swimming a mile, I agree, But is still wonderful. My hours in the pool keep me going!