5 replies to this topic

[nathanwands]

My best friend has had an acute spinal injury (C4-C6) about a week ago. I have been visiting him daily and until yesterday we could speak freely. He is now on a breathing tube and as a result can't speak but can only mouth words. As he has no use of his hands or arms he cannot write. The nurse can read lips pretty well so can communicate with him pretty good. I'm wondering if anyone has any good suggestions for the rest of us. Communicating with him has become very frustrating (both for him and us) and I'm not sure visits are helping right now. What have other people done in this situation? Thanks,

Nathan

[goose]

Hey Nathan....welcome....I was never in that situation but I know others on here that were. Where is he now? Most spinal rehab centers should be able to help with this problem. This would be something they have already dealt with and know how to solve. I went to Shepherd in Atlanta and I know they could help. If he is still in a hospital, I would suggest calling a Spinal Rehab center for advice. With that level of injury, I would also highly advise doing rehab in a center for SCI only. Keep us posted on him.

[aggzy]

gday nathen

i used to use a letter board it was like this

_ 1 2 3 4 5
1 A B C D E
2 F G H I J
3 K L M N O
4 P Q R S T
5 U V W X Y
6 Z

then i would spell words
if i whated to say DRINK
it would be

4,1 =D
3,4 =R
a,2 =I
4,3 =N
1,3 =K

normally the nursse would get it before i finished spelling
also mouth the words letter by letter ppl can lip read single letter than words

p.s. don't get angry with people than can't lip read, it is hard to do

look at my website and watch the videos

good luck

Ag's

Edited by aggzy, 23 August 2011 - 10:10 AM.

[Mary-Anne]

If moving the head is still possible, a head mounted pointer like these
http://www.abledata....&trail=22,10825
and a letter board or on-screen keyboard might work.

Mary-Anne

[BigSis_K]

Hi Nathan

It sounds like we're in similar situations. My lil brother (C7 so far) has minimal fine motor and grip right now & keeps going from off the vent to back on.

Is your friend on the vent temporarily? (like waiting for a pneumonia or PE to clear up?). They took the tube out & put a tracheotomy in my brother's neck. We're still reading lips though & it ticks him off too (we can clearly read the profanity his directs toward our inability to understand his requests).

If your friend is on the vent, is he also pretty well medicated? Because the meds may make it more difficult to use "tools" right now too (least that's how it's rolling for us).

If you do try a board, maybe make sure that the words are pretty large (so he can see them) and just run your finger down the list....My brother has one awesome lip reading nurse too...we just can't seem to get it.

If the tube is temporary than the best I can say (been 3 weeks for us now, up & down...) is be patient.

(I'm watching for other suggestions here as well...)
K~

[wheeliebear75]

THIS GOES FOR BOTH...the original poster & Big_sis + anyone else who it could pertain to:

Although it's VERY frustrating for EVERYONE concerned (except maybe for those lip reading nurses). The trachs for MOST people are temporary....although the letter/word board ideas or blinking codes for communicating are "doable" & they won't cost an arm & a leg, technology that is high-tech is high-dollar, if something can be borrowed great but gadgets that make non verbal ques of/from JUST the movements of the head and/or eyes are probably going to cost more than their new wheelchair + bed + YOUR CAR.....for 95% of us "this too shall pass".



(Attempt at saving everyone's $, NOT shooting down ideas.)

Edited by wheeliebear75, 04 September 2011 - 07:29 PM.