Status
Not open for further replies.

rickmcmahan

Active member
Joined
Jul 14, 2006
Messages
48
Reason
PALS
Country
US
State
ms
City
batesville
My wife and I were discussing this subject last night. We do not know how we will handle this if the road takes us to this point. Here is the concern.

I can no longer speak. My right arm and leg are very weak. What if down the road I loose 100% use of both of my arms/hands. Lets say I am in the bed at night. I need to use the bathroom. How can I alert my wife to my needs? How do you wake you caregiver up if you cannot speak or use your arms and hands? Yes I know about the use of a AAC communication device. I have one. But at night it is not turned on or not accessable . How can it be of help? I know that I am not at this point of my progression, but I think about this stuff every day. How can I help my family prepare for this possibility?

Any help will be great. Thanks.

Rick
 

liz

Senior member
Joined
Nov 9, 2006
Messages
642
Reason
PALS
Diagnosis
11/2006
Country
US
State
NY
City
Albany
Rick -

Thank you for raising these difficult questions - why i have kept focusing on questions at home on things like who is going to wipe my (delicate) a--? Our (not just my) dignity is the issue and I continuously read this forum for ideas old and new. The road is going to take us all to that point.

Rick - are you at that point or just preparing? I'm trying to stay "one step ahead" so looking forward to other response.

Liz
 

rickmcmahan

Active member
Joined
Jul 14, 2006
Messages
48
Reason
PALS
Country
US
State
ms
City
batesville
No I am not at that point . But who knows where I will be down the road. I just worry about things that are going to be dificult to handle and I need any help yall can give us. Thanks.

Rick
 

quadbliss

Distinguished member
Joined
Dec 12, 2006
Messages
392
Reason
PALS
Diagnosis
07/1998
Country
US
State
California
City
Benicia
Rick,

I am paralyzed from the neck down and can't speak. when I am in bed, I get my wife's attention by clicking. I pull a vacuum between my tongue and the roof of my mouth to make the sound. she then reads my lips. When we get to a word she
can't get, I try three times. If she still doesn't get it, I
say "spell". Then I begin spelling the word using the military
words... alpha, bravo, Charlie, etc. It takes a little bit to
memorize the words, but it is well worth it. I have included them
below in case anyone thinks they might help.:-D

SPELL

A .......... ALPHA N .......... NOVEMBER
B .......... BRAVO O .......... OSCAR
C .......... CHARLIE P .......... PAPA
D .......... DELTA Q .......... QUEBEC
E .......... ECHO R .......... ROMEO
F .......... FOXTROT S .......... SIERRA
G .......... GOLF T .......... TANGO
H .......... HOTEL U .......... UNIFORM
I .......... INDIA V .......... VICTOR
J .......... JULIET W .......... WHISKY
K .......... KILO X .......... X-RAY
L .......... LIMA Y .......... YANKEE
M .......... MIKE Z .......... ZULU

Mike
 

quadbliss

Distinguished member
Joined
Dec 12, 2006
Messages
392
Reason
PALS
Diagnosis
07/1998
Country
US
State
California
City
Benicia
Liz,

I am not my body. I am my mind and spirit. I am paralyzed from the
neck down, need help to go to the bathroom, and can't speak. In spite
of this, I have not lost one ounce of my dignity. No one can take
that away from you. You have to surrender it. I have pride in who I
have become, and exist with an ere of confidence.

Mike
 
Status
Not open for further replies.
Top