7 replies to this topic

[Pepita]

My son became a c6 incomplete paraplegic 3 weeks ago. He has had lots of breathing issues and now is on his first trach, which is large. He can't talk. He is awake, and I think frustrated at not being able to get any answers to what is going on.

Have any of you had communication boards, or something that might help? He doesn't have finger abilites yet, and seems like his arms are rather spastic in movement.

I guess I just know I would go nuts having questions etc. and having to lie there!

[StellaLAtella]

I have a friend whose husband has ALS (Lou Gehrig's Disease) and he can only move his eyebrows. He's been this way now for the last year and a half. She uses a board that has a series of common words on it plus the alphabet. She points at words or letters until he gives her a sign.....raising the eyebrows. It's tedious, but effective. He also has a special computer that he wears these glasses that enable him to use the computer unassisted. I hope this helps.
Wishing you and your son all the best!
~Stella

[wheeliebear75]

There is also the "yes / no" game & just keep narrowing it down. I'm guessing that he has the kind that go down the mouth vs. through the throat. This would mean that the breathing trouble he's having may not be permanent. Though I know that doesn't make it any less frustrating. An inexpensive thought......along the same lines as the communication board with the common words, have some images say 4 to a paper & print out a bunch (just google some images, or type out a couple so there is only a couple ways for his eyes to do the pointing.....it'll only cost you some paper & ink).

having one or 2 pages with small pix of family members might be good......then he can use it to "ask" about Dad, siblings nieces & nephews or whom ever was close to him.

[Trinity]

Pepita, on Jul 14 2009, 01:38 AM, said:

My son became a c6 incomplete paraplegic 3 weeks ago. He has had lots of breathing issues and now is on his first trach, which is large. He can't talk. He is awake, and I think frustrated at not being able to get any answers to what is going on.

Have any of you had communication boards, or something that might help? He doesn't have finger abilites yet, and seems like his arms are rather spastic in movement.

I guess I just know I would go nuts having questions etc. and having to lie there!

Hi
There are a number of things you can do such as alphabet boards and of course computers. Alphabet boards need patience however and computers are very expensive. If he is a C6 level then it will just be a matter of time before he is weaned from the ventilator. He may be able to spend some time using a Passy Muir speaking valve although he may have to have his tracheostomy tube reduced in size if it is too big for enough air to flow passed it. Encourage him to mouth words as clearly as possible, you will be surprised at how quickly you learn to lip read and keeping the muscles in his mouth and face moving "normally" will help when he reaches the stage that he has a swallow assessment. I assume you are in America and I'm not sure what the equivalent would be but ask for a referral to a Speech and Language Therapist (called a SALT Assessment in the UK). They often have ingenious ways to enable people to communicate.

Remember this should just be a temporary situation
Good Luck

[wheeliebear75]

Here in the U.S. speech is generally handled by Speech Therapists with possibly a bit of help from Occupational Therapists.....things more physical like licking pudding from an ice-cream cone to get the tongue coordinated. So most things will be handled with/by ST (Speech Therapists) & may or may not have OT (Occupational Therapist) assist.

[Hikkakaru]

wheeliebear75, on Jul 14 2009, 11:26 PM, said:

Here in the U.S. speech is generally handled by Speech Therapists with possibly a bit of help from Occupational Therapists.....things more physical like licking pudding from an ice-cream cone to get the tongue coordinated. So most things will be handled with/by ST (Speech Therapists) & may or may not have OT (Occupational Therapist) assist.

This was one of the most frustrating things to me when I was acute (I had the same issue, no communication). I used a marker taped to my hand to communicate with for the longest time. I had rigid, but available arm movement.

Like Trinity said, ask the patients RT about how soon he can get to a trach size that will facilitate the use of a Muir valve. With a C6 injury at 3 weeks, most likely he is pretty far away from that happening, and the best you'll be able to do for the time being is comfort him, and possibly talk to him about the idea of an antidepressant to help with the wait. Obviously the medical staff is more concerned with his stabilization than his psychological well-being; but ask the staff. They are your most valuable resource.

Sam

Edited by Hikkakaru, 16 July 2009 - 12:23 AM.

[sadwife1]

My husband is a C5, he also has no movement of his hands so I learned very quickly how to read his lips. I wasn't that great, but I did better than any one else. I also kept a pad of paper and pencil with me at all times. I would ask him if the letters were in the first half of the alphabet or the last part, I would write down the letters a few at a time and ask him one by one which letter it was. We made it a game sometimes we laughed so hard because he isn't the best speller, but we got through it, he now has his trach out, he does have some vocal cord damage, but he speaks well enough to understand. Try to be patient. Things will come around.

[samantha miss]

My partner couldnt talk for 10 plus weeks, we got him to mouth the words still and got to learn to lip read, also winking as a yes sign, go through the alphabet and get him to wink when you get the right letter (have a pen and paper handy).
Another thing we did, and still do (hes still on a vent) is a clicking sound with his tongue, its a good noise to get out when hes got no air, its kind of like and emergency thing for us now.
Good Luck, hope things improve for you all.