The Good, the Bad, and the Ugly

Well, despite my title, I am not starting with "the Good". We are starting with "the Bad". Mostly because I want to go in chronological order.

The Bad:

We met with the neuropsychologist, Dr. Coats, to discuss the results of the memory and learning tests she conducted on Ray. While Dr. Coats was only able to give us preliminary results, they were helpful for us and the neurologist. The tests are based on a scale of the patient's age and level of education, so Ray is being compared to other 42 year old men with college educations. Rather than giving us numbers, Dr. Coats provided us with a range of results in several different categories. We were relieved to discover that some things remained in the "normal" range, but were not surprised about the things that did not. Fortunately, Ray's memory is intact. That is a huge relief. But here comes the big "IF": IF we get it into Ray's brain, it's there. It's just a little harder to get it into his memory. 

Dr. Coats suggested making our lives as routine as possible. We have two boys in two school districts, involved in a variety of sports and activities. I serve on boards, take classes, and work - hopefully two different jobs by the time school starts back. "Routine" is difficult. It's something we are really going to have to work on. A large portion of our disagreements come from Ray claiming I didn't inform him of something, and my frustration of knowing that I did. So even though the results of this appointment were depressing, maybe the information can help us to function better as a family.

The Good:

We only had to hear the discouraging results from one doctor. Dr. Knapik, the neurologist, did not make us suffer through them again. Instead, he discussed treatments and options. The $44,000 test is off the table for now. Even if insurance does cover all but 10%. He feels like that is a lot of money to obtain a name. He was able to place Ray's disorder in a particular "clump" of cerebellar ataxias, but there is an entire spectrum within that "clump". Ray is now taking 10mg Aricept. There were a couple of different options for medications. Ray chose the one that he only has to take once a day, and has the smallest number of side effects. It's an Alzheimer's drug, and he is taking the milder dose. Even though Ray does not have Alzheimer's and his symptoms are a little bit different, Dr. Knapik feels that it will improve his thinking and memory, and if not, at least stop or slow the progression. We go back in 90 days unless we feel like things are getting worse, and in that case, Dr. Knapik asked us to call and get Ray in immediately.

The Ugly:
I took the prescription to the pharmacy Friday morning. When the pharmacist gave it to me, she asked if I had any questions regarding the medication or it's side effects. I told her I didn't think I did, unless she felt there was something important I needed to know. She noted that the side effects were minimal, the medication was for dementia, and she hoped that it helped. I almost cried. This is for my 42 year old husband. It was a kick to the gut. This can't be happening, and yet, it is happening. I barely made it to my car before the tears started.

And the BIG UGLY:
I joke that I'm a person of extremes, but it's pretty accurate. I do things big whatever the situation, good or bad. I like to think that I'm a generous person most of the time. I volunteer for committees, boards, and activities when I know my schedule is already packed. I'll do almost anything to help a friend or family member. I have old furniture and carpet so my kids can rodeo. On the other end of the spectrum, I can be incredibly selfish. It's something I struggle with daily. After Ray's appointment with the neurologist in February, I was devastated. I told my mom, "I can't believe this is happening to me." That brought a quick and sharp reprimand. My mother reminded me it's not happening to me. It's happening to Ray. All this time Ray's been the one holding it together. After I cried for days, he finally told me to, "Man up." Ray's just taken everything in stride. Until Friday. Friday was the first time he asked, "Why me?" My heart broke into a million little pieces. How do we answer that question as Christians? "It's God's will," is a horrible answer, and I refuse to use it. I know that Ray and I will probably never understand "why", but we have to hang on to the knowledge that God has a plan for Ray's life. And some days, that's harder than others.