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KarenNWendyn

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I've seen some discussion about this in other threads and also read a lot on line, but I thought it would be good to have an updated discussion about the role of PT in ALS. I've read that some light aerobic and even light weight training is beneficial for stabilizing neuromuscular junctions and preserving function. Yet there seems to be a fine line between enough exercise and pushing too hard, especially with atrophied muscles. I'm worried that my PT is pushing me too hard in my hands and feet which is where I have atrophy, somehow thinking I can rebuild strength. Is it possible to rebuild strength with ALS? Or will pushing here accelerate atrophy? I'm interested in hearing lots of opinions.
Thanks,
Karen
 
You can't rebuild muscle in affected areas is what I have been told and firmly believe. The guideline I received from my clinic is that if, after an hour, you are not 100 percent recovered it was too much.

Did you catch the recent NEALS webinar on this? It is archived if you missed it.

Some PT and OT do not understand ALS. Don't let them bully you
 
Yep- A physiotherapist needs to be educated in MND, or they can cause irreparable harm by pushing too hard. It's not about regaining function so much as retaining function- which means making sure all unaffected muscles are able to pick up the slack for ones that are no longer working. I would hope the focus would be on joint mobility, range of motion exercises and balance (proprioception). No pushing past the pain, or lifting till the muscle is very fatigued!
 
Definitely if you feel you are being pushed too far you are. Only you can tell this, and as Nikki says the time to full recovery is a really good indicator that only you can measure.

You cannot rebuild muscles or regain function, but you can damage irreparably.
 
I found early on that light weights early on and aerobics like stationary bike, and especially pool work helped me physically and mentally. You cannot build strength tho and can speed progression. You hurt your self when recovery takes over an hour or so.

Rom is extremely important.

I continued enjoying water therapy until two months ago. It felt amazing.
Do NOT let trainer push you too hard.
 
I can only agree with the previous comments, you should set your own limits according to what's comfortable to you. My physical therapist is specialized to treat patients with neurological diagnoses. She has developed a home training program with exercises I can perform on my own and at my own leisure. It's focused on retaining mobility and strength, but over the past 8 months we have revised it twice as some if the exercises became too hard, strenuous or uncomfortable to perform.
I've only ever been told that keeping in motion as much as possible, while still comfortable, is positive to retain mobility for as long as possible. I wasn't aware that it could speed up atrophy. But if that's the case - again, only you can be the judge of what's comfortable and not too strenuous. My tip would be to try to find a physical therapist specialized on neurological disorders or even MND/ALS.
 
It's up to you to school PT as to what's good for you and that's gonna change daily in some areas.
ROM, my pt moves my limbs for me as I try to assit her.
I am grateful my pt is too ally open minded about anything I suggest. Good luck !
Chally
 
Thanks to everyone for their helpful input.
Karen
 
Almost all the physical therapists who have come to our house for my PALS knew nothing about ALS.

Last year we had a PT who was the supervising PT who would come once a month to make sure the PT assistant was doing ok ( the assistant came twice a week) tell us that the goal was for Frank to be able to walk without his platform walker and with just someone walking beside him holding his arm. Was she crazy?? Frank could barely walk with the platform walker and then for only about 5 minutes!

The only PT who seemed to know about ALS is the one at the ALS clinic but we only saw her every 4 months at the clinic and she would answer questions but did not make home visits.

You can not rebuild strength in muscles where you have atrophy and risk damaging/injuring them if you try. Do not let the PT push you.

Sharon
 
As others have said, we cannot rebuild/regain anything, and it's wise to have a PT that has experience with ALS/MND. In my case, the PT gave me a set of range-of-motion exercises for legs and arms, which my husband assists with. I do breathing exercises as well
 
Hmm. I did PT for about 2 months when I went to a Neuro who suspected I had ALS. He referred me to a neuromuscular specialist and had me do PT, OT, & speech while I waited. PT & speech were helpful. The OT person only had me play with putty. For EVERY visit. Nothing else.

However, that was all BEFORE I went to my ALS clinic. Once I got there, they gave me home exercise print outs and said good luck, I would absolutely love to get back into PT. It really helped me. And OT also, with a different therapist.

But my doctor doesn't offer to give me any therapy. The only things I've gotten from him are things I had to specifically ask for. Am I crazy, or do I have a bad doctor? Maybe not bad technically, but unhelpful? Uncaring? SMH!
 
Good PT can provide a lot of positives. Bad PT can do a lot of harm.

How are we to know the difference?

I am blessed to have a wife who is a PT. She has done the research to know what is helpful and what is harmful.

She has shared with me that overdoing things is harmful. I focus on range of motion and that has really helped. When I do voluntarily overdo it in the pursuit of some activity, I pay the price.

We spend no time trying to rebuild lost muscle.

Steve
 
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