Much of what we see in the early stages are just that--- stages


Our son, Jamey was very severely injured when he was 19 --- 5 years ago. He was very unresponsive (level 2 on the Ranchos Los Amigos Scale) for months; communicated inconsistently on paper; then finally after about 9 months he began to speak. He still has use of only his right arm and hand --- for some strange reason, it is perfectly functional even though it was completely slammed in the front door of the car when they found him.

It's nice because he has really found his independence in being able to operate a power wheelchair.

We weren't able to bring him home until we bought a new house and made it handicapped accessible, which was when Jamey was about 15 months post-injury.

They had tried the wake-up cocktail of drugs (bromocriptin and sinemet, then ritilin, then amantadine); we didn't see any noticeable difference except on the ritilin, and then he was pretty severely agitated--- as he was most of the time. He didn't sleep a lot, had severe tone (which we know was painful), was uncooperative when having his personal needs met, and very aggressive with that right hand.

When we brought him home, he was still on the g-tube, still aggressive with the right hand (grabbing anything he could and pulling --- mostly hair --- whenever you walked by), still uncooperative in the shower (known to bite if you got close enough), spoke only when urged over and over again (would mostly just sit in a stupor, shrug his shoulders or nod his head for "yes", "no" and "I don't know.")

We brought him home Oct. 19, 1992 and took him off the amantadine, cold turkey (the rehab didn't send him home with any, nor did we have a script, nor were we told that he could suffer withdrawal).

Then in November right around Thanksgiving he started to eat a little, and by Christmas we had stopped his tube feedings. It was at that point that the doctor suggested putting him on the desiprimine ---the only other drug he was on was a muscle relaxant.

The next morning this kid woke up talking and smiling. And he began to sleep a lot better. All of the aggressiveness stopped. He could pay attention and respond better. There is no doubt that the desiprimine made a difference for Jamey. The doctors just don't know which part of the brain has been affected by the injury, so it's always a "shot in the dark," or a well-educated guess. But there are no real side effects to the drug. I think with Jamey it triggered a spontaneous recovery in that area. He was stuck in his current mode, ready to make a leap and needed a little help -- the point being, that drugs CAN help in the early stages of recovery especially.

But I think that much of what we see in the early stages are just that--- stages --- that will be worked through as their brains continue healing little by little. 8 months is not a long time. In fact, NOW I think 2 years is not a long time!

I know it must seem like a lifetime to you, but just let me encourage you that your son/daughter will get better and better in time. Good luck!

Jamey in the Spring of 1992, almost one year post-injury, in rehab.

When we first started this journey 5 years ago with our 25 year old son, I was jumping up and down, constantly saying to his neurologist, "Okay, you saved his life, now what are you going to do to help us provide him a quality of life -- something more than sitting around the house channel surfing. I got too tired jumping up and down, so I just settled in for the long haul, taking it one day at a time, and now I just whisper unrelentingly to anyone who will listen, "What are you gonna do to help us provide some kind of life for him?

Right now we want so much to keep him home. I should mention developmental delay, because even though Jamey was fully grown with 2 years of college under his belt, it is like he is growing up all over again. He was an infant for about 6 months, then a toddler for another year or more (complete with g-tube), then in the 3-4 year old range with a short attention span; now he's somewhere between 4 and 8 -- he'll stop flipping pages and read the big print in Newsweek, he'll stop on a tv channel and get interested; and he knows what he wants to do, which is mostly go to MacDonalds and eat or just to go somewhere. He's really very happy, not really understanding why he is the way he is or if he does, he doesn't seem to care. He's so cute -- he doesn't like to be called cute, he prefers "handsome little devil."

In the last year, I have finally been able to find the PCA of my dreams --- a single, 30 year old woman who supervised a group home for developmentally delayed/MR adults. She is dead set against Jamey doing anything but living here with us. Until now she has been taking him to a day program 45 minutes away, but the program has a lot of growing to do to meet Jamey's needs, and we're beginning to wonder if it's doing anything but just spinning it's wheels, stuck in a rut that just keeps getting deeper and deeper. So, along with a case manager I hired, we're beating the bushes for some things to do like take Jamey into high school health classes and colleges to show them what TBI is all about, for 2 reasons --- 1) to inform them with a pretty severe object lesson 2) to get them interested in a career involved with brain injury.

We're also going to get him going to a pool and horseback riding to get him into better physical shape. He isn't motivated to just exercise. And he can't walk (but he can sure drive a motorized wheelchair!). We'll begin to phase out the day program, which is supposed to be prevocational; but if they get their acts together and can find a supported employment or volunteer position, we'll do that too.

In the meantime, my husband and 21 year old daughter and I go about our lives too! I'm a teacher's aide at an alternative program for kids at risk at the local high school. We love our home. We have a dog and two cats. And we have a long list of people we have collected over the years who have worked with Jamey and are willing to help out when Hilary needs a break.

So far so good! Just take a deep breath, settle in, and take it one day a time! And we're here when you have questions.


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