The Luxury of Time

Heading to Enid for Ray's neurology appointment when I'm tired and emotional is not a great plan. Unfortunately, it takes three months to get an appointment, so changing it really isn't an option. Besides, I'm likely to be tired and emotional three months from now, so it probably wouldn't make a difference. I wanted to cry as I was getting ready this morning. I wanted to cry on the drive over. It took every ounce of willpower I had not to cry in front of the doctor during the appointment. I even managed to keep it together on the way home. Complete miracle. Seriously.

Ray isn't doing well at all. The Aricept worked briefly, but I can't tell that it's helping any longer. And maybe it is, but he's deteriorating so fast the meds can't keep up. Okay, I've been pretty vague about Ray's diagnosis. That was intentional. I needed more time to process it, come to terms with it, and see what could be done about it. I really haven't come to terms with it, and after immense amounts of research, tests, and doctor's visits believe there isn't anything that can be done about it, so I might as well just put it out there.

Ray's cerebellum has atrophied, and is continuing to whither away. It can't be cured. We can treat the symptoms and try to keep him going as long as possible, but there you have it. We are just losing him a bit at a time, some days faster than others, and there isn't anything that can be done to reverse it or stop it. We don't have a time frame, but the decline over the last year has been significant.

The first time we saw Dr. Knappick, he was so confident he could help us. He felt certain we could make a diagnosis, and fight whatever was attacking Ray's system. Today was tough. He said, "I don't want you having to run over here all the time, but I want to be there with you to hold your hand through this process." In other words, it's going to get worse, and eventually Ray will die, and Dr. Knappick can't do anything to help us medically, but wants to be there with us anyway.

The side effects of Aricept are really bothering Ray, and since it doesn't seem to be helping anyways, Dr. Knappick said to stop taking them. If after he stops, we see a big dip, then there is other medication to try. If not, it may be better to just go without for a while.

Some days I think that I'm dealing with this and know what is happening. And then there are days like today when I can barely put one foot in front of the other. I feel cheated. I should get more time. My kids should get more time. Not with Ray just here physically, but all of him here. There's so much about him that's already gone, things the kids can't remember, like his extreme patience.  His sweet heart is still here, and for that I'm grateful.

I know that on some levels Ray has accepted what is happening. Today he requested that I find someone to take him deer hunting. He figures it's probably the last year he can do it, and we both know he can't do it alone. If anyone is interested, please, let me know.

And on that depressing note, I'm headed to bed.