what did you do when you lost the use of your hands and voice?

Status
Not open for further replies.

lostin

Active member
Joined
Jun 21, 2011
Messages
63
Reason
PALS
Diagnosis
09/2010
Country
th
State
phuket
City
patong
my voice has already gone and i can't see my hands working after another month or 2. with no hands i think i won't have the will to carry on
 
My post with a link has gone to moderation. There are different communication devices available that you don't need a voice or hands to use. It should pop up soon so look for it. Hang in there Babe!
 
I am facing the same thing....but i am determined to keep my attitude positive...I have an Ipad with Chat app on it and i=you can also get a headmouse for it when my hands go. I also have a dynavox with eyegaze....I will not let anything keep me from communicating my thoughts and feelings, though I know the transition will horrendous....Praying for you Lostin that you have courage! and determination to find your way like others have done on this Forum. I take my courage from these brave souls who have gone down this path before us!
 
We're all facing the same thing Dear Joyce. I know a guy and he can only move his beautiful eyes and he has the most beautiful blinding smile that he flashes quite frequently. He's great and has no problem communicating with his eyes and does have the eye gaze feature. Sometimes he talks too much! ;) I admire him very much.
 
Thank you for posting. It is hard to face, but this is much needed info.
 
My husband lost his hands first, then his voice. He used the Dynavox with eyegaze and had no problem communicating. As for all of the other things one does with there hands, he had mine. Life was good.
 
looked at eyegaze but it was $17000. is that what you paid?
 
My Dynavox didn't cost me a dime Medicare and my supplement insurance paid for it they charged $12000 for my computer and the stand Medicare said it was worth $6000+ so without the supplement I would have paid 20% . Medicare pays on most all of our stuff.
 
no medicare i have to pay for everything. there must be 2nd eyegazes and dynavoxes around people are dying all the time but where? ebay maybe
 
My mother lost her voice first then later hands. She was tested for suitability for eyegaze technology & also for a switch which she operated with her head. Sadly they took so long getting the machine (a smartbox, not a dynovox) for us (6months) that she died before it arrived. The going was tough for her and she missed her communication hugely. That said I saw her form marvellous relationships with people using her smile. We worked out a system for her to communicate yes & no & that's how we functioned practically. The disease took much but it didn't take away the core of her being which shone through even when all muscle power had gone. Hang in lostin, thinking of you.
 
Make a new thread asking for communication equipment that some family members may have
 
lostin, you might check with the ALS Guardian Angels and see if some type of device has been donated to them. Otherwise, if you have money, there are a few of them listed in the used equipment part of the forum.
 
Patty, he's in another country.
 
Yeah, I know--but I'd think one could be shipped.
 
Status
Not open for further replies.
Back
Top