Monday, February 15, 2010

Just an Update . . .

Keith had his bi-annual appointment with Dr. Wooten today. I wasn’t able to go this time because it was so early in the morning, and getting two babies ready that early is not my idea of a good time! Still, I hate to miss appointments with Dr. Wooten.

This appointment was important. Keith has gone off Mirapex and re-adjusted his other medications. Lately he has been having a very difficult time sleeping, and we’ve noticed a few other physical and cognitive changes as well. There was a lot to discuss, and Doc particularly likes to hear the spouses/caregivers point of view. Sometimes we are able to see things the PWP is unable to see, or give a point of view to yet told. All in all, it turned out well – Dr. Wooten adjusted the medication Keith is on, and put him on Neurontin, a drug approved for nerve pain, and commonly used as an anti-seizure medication. I am a little nervous about the side effects (suicidal thoughts!), but I promised months ago to back off a little, so I will. Well, I’ll try to, anyway.

Dr. Wooten also told Keith that he is a good candidate for DBS, deep brain stimulation. I had always thought it was most helpful to those that have severe tremors, which is mild in Keith, but Wooten said that it works wonders on the symptoms Keith does have, namely rigidity and stiffness, and muscle cramps. Keith has never been a fan of DBS, but after talking to Dr. Wooten about it today, he seems pretty eager to learn more. He is open to the idea, which is taking a big step in the right direction. I have to admit; I am a little excited about the thought of Keith not having all those horrible physical symptoms. Imagine Keith not being in pain, or struggling to put his shoes on, or not having a stooped posture at all times! Even if Keith decides against the surgery, it really is nice to know that we have another option. If things get unbearable for him, he can always play that card.  I know, of course, that it is not a cure, but it will help, and when it comes to PD, any and all help is beneficial.

So once again, we have found hope in what seems to be a hopeless disease.  Thank you, God!


One Life said...

I understand the difficulty sleeping part. It seems like B goes through these bouts of it too. I've come to the point now that I can pretty well predict the night. Bed at 9 or so. Wake around 3 a.m. like clockwork - he gets up to use the bathroom and is achy and stiff. Sometimes he is so restless he goes out to the garage to stand and have a smoke until he can sleep again. Back to sleep and up at 5:30 for pills.

I wonder sometimes if some of the sleep issues are because of the pill cycle. When he wakes, it's usually because he's hurting. I think that's when the meds are worn off. He gets a boost from the nicotine when he gets up to smoke, which carries him through till we get up at 5:30 for the day. Just a speculation.

The other thing I wanted to mention is the DBS. We aren't there yet, so it isn't high on my radar right now. But I do still visit the board, and that question comes up a lot. There's enough people on there that have tried it and have had bad results that it gives me pause. I think there may be an artificially high number of DBS failures there, given, since it's primarily a board for end-stage caregivers, and their patients are those most likely to have not found success with other things.

But I can't help the feeling that it's such a permanent choice - if it works, it's great. The problem is that it only works for a while (kind of like Lasik for bad eyesight. Works great for the short term, but we all end up in glasses sooner or later). And there is always the potential for scary complications.

But this I do know: you will do all the research and find out everything there is to know about the procedure. And after all the soul searching and prayer, you and Keith will make the best decision for him and your family. :-) It's a hard decision to say yea or nay to such a large thing. But your friends and family will be with you on the journey, no matter what the choice, and we'll share whatever help we can give when you need it.

If you do decide to pursue that course of action, please continue to keep us updated. There are some of us who are afraid of the unknown, and others who realize that in order to truly live, you have to step off that safe place and take chances, because it is only by taking those chances that great things happen. You and Keith are one of those stories that give us hope.

Mary said...

Oh, believe me, Michelle, we are terrified of DBS. We've known several people who have had it done, and it seems that it either works wonders, or totally ruins you. Sad, but true.

I guess it all depends on how much you are willing risk to get your life back, if you are truly at that point. We are not quite there yet, but according to the doc, we aren't too far from it, either.

We will certainly have much to blog about when/if that day arrives.

Thank you so much for your friendship, kind words and so, so much understanding! :)