not about my dd this time.. rather about my 26 y/o friend who suffered a TBI and is in a nursing...

[Kailey's mom]

this is year 3 since the accident... physically, he's in bed, gtube, doesnt' move (non purposeful movements) he will open his eyes when talked to, and seems to understand what we are talking about. I KNOW he understands. Anyway, since he has like no PT, or OT whatso ever, he is getting foot drop. What specialist addresses this. AFO's???? If he was younger he would be getting therapy, but since he is an adult, he's just in a nursing home They lift him with a hoyer, or a 2 person body lift.. but I was wondering if a stander of some sort would benefit. I want to help my friend, I've known him since he was about 2 years old. Without therapy, he is just going to get stiffer..if that makes sense. Does anyone have any links of special equipment I can show his mother that may benefit him. He is non verbal...unless you count when he is pissed when we brush his teeth. I like getting him mad, because at least I can hear his voice. I wish I knew how the heck to teach him to communicate. He has no use of his hands...or his voice. I want to know what he is thinking. Any suggestions would be so appreciated!!!!

[pixiekisses]

I'm so sorry about your friend.
There are options, I don't know all of them, but I've heard about computers that you use your eyes to control and can type with your eyes. And also a ALS patient who got a computer she controlled with her nose somehow. I would talk to a physioterapist or ergo. terapist or something, because there are options like that and he should be given the chance to communicate.
He should absolutely be getting physiotherapy, at least! It doesn't matter how old he is. That makes me mad to hear.

[Aridel]

Can you get a reliable yes/no response? What I mean, is can your friend show you the right answer when you ask a question? I've seen this done with some people post-stroke, where they ask the person to look up for "yes" or blink, or do anything that they can control. Just as long as it is always the same movement. If that works, you can get basic info across by asking questions or even having your friend spell something (Do you want to go outside? I have this movie or that movie which one do you want? Spell it..A? B?) It's a really long, frustrating thing to have to do, but it's low tech and easy to learn. Sometimes having a bit of communication can be so helpful.

As far as the therapies, sadly a lot of them do run out for adults especially as they get further from their injuries. He should be getting at least passive stretching consistently, so that he doesn't tighten up any more. I would ask exactly who is doing what with him; sometimes there are aides or similar who do a lot of the routine therapy-type services, for people who may not get direct services from a PT or OT. Is he still on private insurance or has he exhausted that? Even adults in a state-run facility I've been to were receiving some sort of therapies to prevent further deterioration, and to help rehabilitate when possible.

Could you or another support person go to a planning meeting with his mother? I haven't been the primary family member at any meeting for an adult, but I imagine they are just as overwhelming and emotionally difficult as with children in therapy or school meetings. Having another person to remember what questions to ask and what to push for can be very helpful.

And you are a wonderful friend for looking out for him like this.

[pixiekisses]

Oh that made me remember the movie "The diving bell and the butterfly".

"Elle France editor Jean-Dominique Bauby, who, in 1995 at the age of 43, suffered a stroke that paralyzed his entire body, except his left eye. Using that eye to blink out his memoir, Bauby eloquently described the aspects of his interior world, from the psychological torment of being trapped inside his body to his imagined stories from lands he'd only visited in his mind."

It's very touching, strong, beautiful, hopeful. He blinked a whole book with one eye! It's a great tool though, described in there in how they use the alphabet and the blinking.

[katelove]

I'm very sorry to hear about your friend.

For the foot drop he needs splints which a physiotherapist would make and fit. In the meantime anything that holds his feet at 90degrees will help - firm pillows, rolled up towels, the footboard of the bed. To protect his feet it may help if he wears shoes and socks most of the time as well.

The other thing he needs to reduce stiffness and contractures is passive range of motion exercises done at least twice a day (more if possible). Again a physio or Registered Nurse needs to eplain the process but anyone can do these, icluding friends and family. It is just a matter of moving *every* joint (including all the finger and toe joints) through their full range of motion while supporting them to prevent injury.

A standing lifter probably isn't suitable for your friend as all the ones I have seen require the person to be able to take some of their weight on their legs and, from what you've described, it doesn't sound like he can do that. It wouldn't really help the foot drop anyway as he would be in it for such a short time.

All the best. I hope your friend can get the help he needs.

[PikkuMyy]

There are def. quite a few different communication devices for people with very limited mobility. Some use eye gaze, some eye blinks or movements, some breath. I bet there are ones he could operate with his mouth as well. Unfortunately, I don't know the brand names of them since my students have only used ones with their fingers.

The main issue would be expense - who will pay for it? These machines tend to cost a lot of money. There are a lot of less expensive versions for people who can use their hands, such as for an iPod Touch or iPhone but for the adaptions, I'm afraid he'll need something more expensive.

On the other hand, if you started with a homemade non-tech version and could prove that he can communicate, then you have a good case for insurance/medicaid providing at least a rental of the machine. A yes/no/other basic phrases written on a larger board with space between so you can follow his eye gaze, an alphabet board so he can spell out what he wants to say (and the machines have text recognition so as he gets the letters, it gives options of full words so he doesn't have to "type" the whole thing).

[Kailey's mom]

Thanks everybody for all the support and suggestions. I'll try writing yes and no on a big poster board to see if he can do the eye gaze. I've tried the blinking, but since he blinks A LOT, it's hard to tell. I'm going to talk to his mom about getting him a psysiotherapist. I know for a fact he doesn't have one. He's not on the waiver unfortunitily, or he would be getting more services If he were on the waiver, he would be able to come home....but he cant' get on the waiver until he IS already home.. so it's a catch 22. His mom works full time and is scared to bring him home with no services at all, waitng and hoping the waiver kicks in. I'll keep you all updated, I really hope the eye gaze works!!! That would be amazing, for my friend, and for his family and friends.. I'm scared he's stuck in his own mind.

[PikkuMyy]

BTW - a speech therapist would be the go-to person for different ways to test his cognition/communication abilities, as well as the person who could refer him for a communication device.

[Aridel]

Originally Posted by PikkuMyy

BTW - a speech therapist would be the go-to person for different ways to test his cognition/communication abilities, as well as the person who could refer him for a communication device.

Yeah, if an SLP could work with him, they may be able to develop a low or high-tech system that works. They can be very good at figuring out what movement to use and teaching people to use an eye-gaze board. It really sounds like you need someone who knows the system to go through all the paperwork and requirements with the family, so they're not just waiting on the waiver but not really knowing if it will come through or how to change things.