People mean well

[codyclan]

Just a rant here about well intentioned folks. My PALS is starting to have issues with is hands, in particular a couple of fingers that are always curled down and that he can no longer lift upward. We have had more than one person suggest that he use a squeeze ball to strengthen his hand muscles and to practice puckering to improve his lip strength. UGH! And when you try to explain that this disease doesn't work like that, they just go, uh huh. Like he's not trying to help himself! He appears pretty functional, so I guess people just think he can control the progression. Anyway, just needed to rant about that!

 

[cheerleader]

Even some medical personnel, physical therapists, etc. don't understand this disease. No wonder the general population doesn't get it! It just defies everything we've been taught about "use it or lose it!"

 

[MaxEidswick]

>Even some medical personnel, physical therapists, etc. don't understand this disease.

most :-(

>No wonder the general population doesn't get it! It just defies everything we've been taught about "use it or lose it!"

Ditto that!

 

[skipper66]

They don't seem to know much about it at the hospital I work at. But, we did have a new nurse the other day who's uncle lived in our town and passed away of bulbar ALS. She knew all about it. I saw one patient come through with it since my dad's diagnosis three years ago. I guess since there's not much they can really do that not too many come to the ER for treatment.

 

[swalker]

Even some medical personnel, physical therapists, etc. don't understand this disease. No wonder the general population doesn't get it! It just defies everything we've been taught about "use it or lose it!"

I have had two separate doctors say to me "use it or lose it!".

Steve

 

[affected]

Good rant!

Not only did I battle this with physios and well meaners, but with my own PALS. He had FTD and believed that not pushing himself beyond his ability was giving in to the disease.

I think with these people the best thing is to politely state the truth in a small way, but smile and thank them. Then offer them a link to something like the ABC's of ALS.

If they persist a slap just may be in order. No no joking ... :shock: :lol:

 

[DreamsEnd]

We take comments like that as an opportunity to educate others...we'll talk as long as they'll listen.

Sherry

 

[affected]

Sherry I agree, it is always an opportunity to educate.

But the rant is about the people whose response is 'uh huh', meaning they know better than you ...

Mostly I had a great response to explaining the disease to people, some health professionals were very open to learning about it.

Some people just hold their ignorance even if they mean well.

 

[DreamsEnd]

Tillie, you're right of course about the ignoramuses! We've all met them even before ALS. Sorry if I was sounding insensitive to the rant, which was well entitled.

Sherry

 

[affected]

Nah not insensitive Sherry, but I found I was on a mission to educate in the first months, and found it so wearing as time went on and people came up with all these well meaning loads of crap they would dump on us.

 

[Clearwater AL]

That "Use it or lose it" thing would apply to PLS (maybe other MNDs too) being the lower motor neurons are still getting a signal but a poor one. But... for a neurologist to tell an ALS patient "Use it or lose it" might be a good indicator to get another neuro.

 

[4tloml]

I'll join the rant here, although I already sort of took it out on one of those "ignoramuses."

He was a body-builder type and I asked him if he remembered how good it felt when he worked out till he was a little sore and he knew he had broken down a little muscle that would build back up even bigger and stronger. His eyes lit up, then I asked him how he would feel if he knew that every time he experienced that hard workout, he had permanently damaged muscle that would never recover, never, ever grow back stronger or bigger or even at all? His face sort of went flat. That, I told him, is what happens to someone with ALS when they "work out" hard. The know-it-all had nothing more to say.

But sometimes, just an "Uh Huh" right back is all there's energy for. That or a good eye roll!:roll:

 

[affected]

4tloml well said!

 

[davbo49]

max did a good one just sent them to abc's of als on youtube . i made copies and gave them out. firday i got my neck brace the dr want me to put it on. right and then ask why i need it for. i had jane give him a cd. i hate to say this but i think a lot of you know more then the dr's lol

 

[Clearwater AL]

Maybe it's time for the Neurology community to come up with a new phrase rather than the "Use it or lose it" jingle. Something like "Do... but don't over do... what you can."