What now?

Hope is dwindling and frustration levels are at an all time high. Curiously this has nothing to do with Jared himself.

A few days ago I was sitting in the neurology pain clinic waiting to have Jared's Baclofen pump refilled when I picked up "Neurology Now" magazine. I began to read an article, "Walk This Way" by Amy Paturel, M.S., M.P.H., the article was focused on gait disturbances after stroke. Jared relates to stroke victims very well considering he suffers from paralysis on the left side of his body.

I read about Dr. Richard Macko's exercise training study at the Maryland Exercise and Robotics Center of Excellence in the Baltimore VA Medical Center. According to the article, and the study, consistent repetitive motion of walking on a treadmill can help the brain "rewire" itself and develop new connections to compensate for the damaged ones.

Suddenly I became excited. I knew that doing the motions could potentially help Jared relearn how to use his body again, I had never seen a study with an actual program. I began to think about how to do this with Jared at home and started my research. Dr. Macko is a VA doctor so I looked up his email and wrote him explaining Jared's condition. The study he did wasn't for just stroke victims, it also included Parkinson's, incomplete spinal chord injury, and traumatic brain injury. I looked up the study he did and saw Jared met the criteria to participate in the study or program. When I wrote Dr. Macko I explained Jared's condition and asked him if he could help me get him into a similar program. I also asked if he couldn't then maybe he could send me some guidelines to do it myself.

I don't know if I will receive a response from Dr. Macko, I'm only hoping he believes in his work enough to help Jared. I hope that he jumps at the opportunity to have a Diffuse Axonal Injury case study subject.

I don't know if I have a right to demand Jared be placed in such a program. I need to call some people at the local VA and see what Jared's rights are for medical care. I want to call Dr. Mac from Richmond and ask him if he knows about the study and program, I'm pretty sure he may know of Dr. Macko.

Today horror struck again as I opened Jared's disability check. His benefits are being garnished for unpaid co payments at the VA. We struggled before, now I'm not sure if I have enough money to keep Jared here at home. I hope that I can get Jared into a inpatient rehabilitation program for a few months so I can work. I need to pay off the debts that are garnishing our checks so that we will have enough money to survive. If all efforts fail I may have to place Jared into a "Nursing home" so that I can work.

Again I have to choose.

I hate this. I am sick. Anxiety had gotten so bad for me just thinking about things like this send me into a hacking, dry heaving, puking, fit. I can't eat and I can't sleep. I can barely speak of things like this before bursting into tears.

I don't know what to do. I have a problem and it isn't Jared. The world around Jared is collapsing and I can't seem to hold it up.

I asked myself today if I was being selfish. Does it really matter if Jared is here living with me? It seems like I am the one who wants and needs him here. It's me that doesn't want to bear the guilt of letting him go some where else.

Is quantity better than quality? Would it be better if I relieved myself of these burdens and just enjoyed Jared on the weekend? I can't imagine I'm terribly enjoyable on a daily basis. I do get frustrated and snap at the kids, I don't spend as much one on one time with anyone because I'm stretched so thin trying to do everything on my own.

I have good intentions to help Jared recover. I set up his gym membership and we had good results when we were able to go and work out. The problem is that I don't have a baby sitter for my kids, I can't take them with me.

Is there a facility out there that can work with Jared more consistently than I can? Would it help him?

Today I sat and thought for a bit. Mentally I asked myself why I'm doing all of this? After much thought I decided it was because I missed Jared. As time passes and he recovers I get a little glimpse of the Jared he used to be. I loved that man so much. So many people lose loved ones, I know they think "If I could just see them one last time.", I keep wishing to see him one more time.

For the past few weeks Jared has become more aggressive and violent a times. He keeps having episodes and kicks, bites, punches, and swears at me. The angry episodes only last for seconds and sometimes a minute or two. Jared calms down as soon as I can get him to talk to me. He tells me what is wrong and then we talk it out. I'm trying to avoid the whole violence thing and just use words. He always agrees with me that hurting me is bad. He says he doesn't want to hurt me but when he gets angry all that goes out the window. Just moments after his last violent outburst he looked at me, and asked "What's wrong?". I was sitting on the bed crying after he punched me several times, he had no memory of the incident.

Aggressiveness and violent behavior are common after head injury. I've been told this a thousand times, no one told me what to do in the event that it does happen. The only solution anyone has offered me is medication. I won't allow it. Jared had a hard enough time staying awake as it is, I don't even want to know what those drugs will do to him.

After a bit of research on Dilantin (anticonvulsant medication) I found out that it can cause behavior changes. I'm hoping we can blame it all on the medication and take him off of it and solving all of our problems.

It might be a fat chance but I'll take it.

I don't believe Jared ever had a seizure condition and I think the medicine is making him more tired than he would be with out it. I've noticed Jared is more awake, aware, and better functioning in general before taking his dose of Dilantin. I want to see what he is like off of it completely. Hopefully the neurologist will agree with me on August 5th at his next appointment.

1 comment:

  1. I clicked on your link on BBC, and just sat here and read your entire amazing story. Thank you for sharing it with me.