Electric Stimulation/VitalStim

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natybaez

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Hi my dad was using electric stimulation and it seemed to help him maintain swallowing level FOIS 5. However when consulted with 2 speech pathologist in ALS clinic they said there is no research that supports the use of this and they dont do it.

I was wondering if anybody has experience using electric stimulation?

Thank you!
 

lgelb

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affected

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I had almost forgotten about the hope we had in diaphragm pacing for quite a while and so many were trying it, then the devastation as it proved to actually hasten progression of loss of breathing muscles. Important warning of the potential to not only not help, but to harm.
 

jethro

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do you think of TENS or EMS? EMS helps me a lot. how many minutes per day?
 

JackieZ

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A PT wanted to put me on an eStim bike and my neurologist said ABSOLUTELY NOT. He said they believe it to speed up progression.
 

lgelb

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We don't really know what neurostimulation does in PALS...there is too little data. But we know the nerves are dying and at least in certain scenarios it seems reasonable to think of them as a battery that there is only so much juice left, so while it's a worthwhile investment to move while you can, i.e. live your life, artificially stimulating the nerves (think overheating the battery, maybe) might not be wise. It may turn out that there's a certain window that it's at least neutral, but I don't think we've identified even that window, let alone where it may help.
 
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