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.
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.
