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HospiceMan

New member
Joined
Apr 21, 2007
Messages
2
Reason
PALS
Country
US
State
AZ
City
Phoenix
I am a hospice volunteer who is assigned to a wonderful guy who has ALS. I can see the deterioration in his speaking ability, with increased slurring and difficulty swallowing.

He has a communication device that calibrates on the eye, and then the eye can be used to pick keys on a keyboard which then translate to a message that is automatically translated into speech.

However, my patient does not practice this because he finds it hard. Yet, I am wondering what he plans to do when his voice is finally gone - just panic? He has no ability to write, so I do not know what other communications methods will work except to perhaps grunt?

Anyone have any experiences with an ALS patient and their communication problems and whether anyone with ALS has truly "conquered" one of these eye-speech machines? If I had ALS and was not in denial, I would be practicing at least a few hours a day so that if/when the voice was gone, I could switch immediately over to another means of communication.

I am not judging my patient, just worried about him. He seems to think he has all the time in the world, and I am not sure where that concept is coming from. Nonetheless, my role as a volunteer is to serve him, not become his nagging father.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hello and welcome to the forum. One only has to look at Mike aka Quadbliss's paintings to see what can be done with positive thinking and new technology. Do a few searches here and see what people are doing. There are great advances in technology. Mike says it took him 100 hours for his last painting. To him and to us it was worth it. You have to believe, and want to have quality of life. Some of us do and some don't. I feel badly for those that don't.
AL.
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Welcome Hospiceman. You are going to be a great resource for folks on this fourm, as the topic of hosipce often comes up. My Mom is getting hospice services at her nursing home and I can't say enough about these people!

I know what you mean about the patient being in denial. It's quite common but not the way I prefer to operate. I have a friend in the early stages of Alzheimer's and while I think she should be making plans for her future now while she is still able to think clearly, she refuses to talk about it. This is going to be much harder on her family in the long run.

Anyway welcome and jump in any time! just a thought, perhaps if your PAL had someone read him some of the posts here he would understand that he is not alone. People have posted some funny stories about coping. Just a thought. Cindy
 
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