4 replies to this topic

[cjfromva]

Greetings, I am the close friend of a c5 injured patient. He is 29, and was injured last July and its going on 5 months now. He was injured in a diving accident at a lake. He is still on his ventilator and has been moved to an "Assisted living and rehab facility." I was optimistic, at first, about him going to this new place, but he has become severly depressed and doesn't have much will to go on. He tells me that the place is "just a nursing home" when I ask him about what they're doing to ween him off the vent, or work on his PT, etc. He feels that he is going nowhere fast and, unfortunately, the facility, I believe, is treating him as such. I'm not rehab expert, but it honestly doesn't feel to me like they're trying to work him off of the vent at all. Am i missing something? Is this a "waiting game" sort of process vs an active process? His ability to perform PT is severly limited due to the presence of the ventilator. As of now, he can move flex and extend both arms at the elbows rotate his right hand and only rotate his left hand one way. He currently has no hand usage. His reflexes were checked at both knees and he had them, so there seems to be no further spinal damage below the level of the c5 injury. I am optimistic that if he could get to PT, he would make good progress. It just feels like the caretakers have sort of forgotten about him. I dunno, maybe its just me being paranoid. In any event, he is having a hard time dealing with it mentally, in spite of the efforts of his family and me. Any advice or input would be appreciated! Of course, I'll continue to be there for him as much as possible and approach him with an optimistic attitude in hopes it will rub off on him. I LOVE reading the stories of some of the members with his level of injury being able to do PT in walkers. Thank you all for making this forum possible.

[nomis]

It's never good to see a motivated person frustrated. But we don't know the full story and it sounds like your mate doesn't either. The rehab staff should be more up front, openly explaining the programme and their reasons.

Your country has complex insurance systems which seem often to hinder as much as help - maybe that has something to do with it. Whatever, I'd be demanding clearer info and expectations from rehab staff. It's part of their job.

[Tetracyclone]

Nomis, in the US professional will refuse to give information to anyone but patient and close family. cjfroma has to go to family to get information and could be a good catalyst for getting someone to insist on PT.

Of course patient can demand information, and this friend could help coach him on what to ask, since he is depressed and likely not thinking well.

But we know what a nursing home is. The guy is a bowel, bladder, and sore issue in a bed for them. If he is avoiding UTIs and not getting sores, the care is basically good.

My encouragement to cjfroma to play the role of advocate to whomever will listen. Also, I spent my first few months in bed doing every isometric exercise i could think of and moving any thing that would move as much and as often as I could because it was clear hospital staff did not have enough time to do as much as needed doing. Even if your friend got PT for 2 hours every day it would not be as much as is needed.

Edited by Tetracyclone, 18 December 2010 - 08:17 AM.

[Squelen]

cjfromva, on 18 December 2010 - 05:11 AM, said:

Greetings, I am the close friend of a c5 injured patient. He is 29, and was injured last July and its going on 5 months now. He was injured in a diving accident at a lake. He is still on his ventilator and has been moved to an "Assisted living and rehab facility." I was optimistic, at first, about him going to this new place, but he has become severly depressed and doesn't have much will to go on. He tells me that the place is "just a nursing home" when I ask him about what they're doing to ween him off the vent, or work on his PT, etc. He feels that he is going nowhere fast and, unfortunately, the facility, I believe, is treating him as such. I'm not rehab expert, but it honestly doesn't feel to me like they're trying to work him off of the vent at all. Am i missing something?

I'd also just like to add encouragement to both you and your friend...unless there's medical probs with your friends lungs, he could and should be weened off the vent. I'm classed as c4/5 complete and initially vented. Took a few months, but breathin all by myself now! (never thought i'dd actually say that as somethin i'm proud of!) It IS possible, so if you can, fight for it! Nomis has a point re: medical insurances etc- Its VERY frustrating but do be encouraged to fight the system/help family to get more info and possibly better rehab. Notice its been a while since last post, so i hope things are better now. Sq x

[goose]

after my sci and release from Shepherd spinal center,i decided to continue PT and OT at another rehab center - 3 days a week. this place was a general therapy center. i received therapy but was treated like they were wasting their time since i had a sci. these were trained therapist and didn't know any better. i gained process for several years and still feel like i'm getting better. i had to fight for someone who would help. keep encouraging him.