10 Things I Wish I Had Known About ALS

[Green Queen]

THINGS I Wish I Had Known About ALS:

I wish I had known from the beginning that most doctors and nearly all nurses have absolutely no knowledge of how to deal with paralyzed people. I had to educate--and beware of--every medical person we ever came in contact with.

Oooh yeah...I try my absolute hardest to keep this wonky smile on my face and be polite to all, but some days are just harder than others!

When I had my fall recently and had to have X-rays, the bloke wanted me to take my wedding ring off. No worries, but I needed help, as my useless right hand can't do it.
You know how you kind of yell at people and say one word sentences...

I. NEED. HELP.

in the end, I went to get Wayne from outside to help. It was mind numbing.

But yes, my faith in our God gets me through those one word sentences...

God bless, Janelle x

 

[DreamsEnd]

THINGS I Wish I Had Known About ALS:

I wish I had known from the beginning that most doctors and nearly all nurses have absolutely no knowledge of how to deal with paralyzed people. I had to educate--and beware of--every medical person we ever came in contact with.

Double ditto!

Sherry

 

[bear1973]

I had a great friend of mine say to me not too long ago....
"you know, if you look at this from a physical perspective, you're going to get pretty down. But if you look at it from a spiritual perspective, then you've got a chance"
They helped me a great deal.

 

[MaxEidswick]

>"you know, if you look at this from a physical perspective, you're going to get pretty down. But if you look at it from a spiritual perspective, then you've got a chance"

 

[Janie H]

After two times in the hospital I learned that many nurses and doctors don't understand what ALS is, nothing worse than being sick and unable to speak, I carry a white board but they seem to think I can't hear or think clearly. Doesn't compAre with being paralyzed
Janie

 

[MaxEidswick]

>I learned that many nurses and doctors don't understand what ALS is, nothing worse than being sick and unable to speak

yup!

 

[Green Queen]

Oh Janie...I hear you! It's as though shouting at you will make you speak! Grrrrr!
God bless, Janelle xx

 

[Mtzu]

2) I've learned that I am not in it alone. It effects everyone I know and love.

For me the biggest and hardest lesson so far.

 

[lgelb]

All due respect to the believers, for any newbies reading, the forum is for all of us.

--Laurie