I haven't posted for a while. This isn't because things have begun going badly, it's just a fair amount of effort to keep writing content I think people will find interesting. In 2015, when they diagnosed me in Seattle, one thing they told me was "reduce your stress." Keeping content flowing on the blog takes some effort.
So how has that reduce-stress thing gone? Well... as an elder in our church, that's kept me busy, and we're presently in Hawaii helping my wife's sister and husband move into a senior living situation. At least, I think we're helping. But we're not going to the beach.
Researchers from the Alzheimer's Disease Research Center at Harborview in Seattle continue to study me. Not uniquely, I'm just one subject among many in several ongoing studies. One is the Clinical Core Study, and another is the UW Memory Tracking Study. The tracking study involves a weekly 8-minute test of my memory that I take on line. It was supposed to last one year and, in any event, be done by September 30, 2023. However, I volunteered to participate in an extension of the study, and I've been beyond my one year by six months or so.
A weekly test involves some topic, like jellyfish species. Flags of Caribbean nations and national parks are two other topics they've used to test me. I'm shown a picture of a jellyfish along with it's name. Then I'm asked to identify the picture in later screens in a multiple choice format. First I learn two (usually) and then they build to perhaps 15 different species. My perception is that this is simply testing short-term memory and perhaps measuring damage to the hippocampus.
I've been doing this for about 18 months. I rarely get them all right, but I feel well about how I do. (The protocol doesn't permit them to share their assessment of how I'm doing.) I know they score me on how fast I respond to each prompt, and I can tell that I'm pretty quick.
But they threw me a new twist last week. The topic was knots, but I did that one before, maybe six months ago. So did they teach me the knots all over again? Nope. They wanted to know what I remembered from the previous lesson. In other words, they were now testing my long-term memory.
When I started, I was disturbed (very) that they weren't teaching me the knots, but they were testing what I could pull back from my test six months ago. But I was actually quite surprised at what I was able to remember. Not perfect, but much better than I thought I'd do when I first saw I'd need to remember from to old test.
So the good news is that I continue to do extremely well in the area of memory and cognition.
The bad news is that my balance continues to deteriorate, and my sense is that the deterioration is accelerating.
You will recall that, last summer, I saw a new neurosurgeon to evaluate me for hydrocephalus. After reviewing all of my MRIs, test results, and other of my records, he concluded that I have both Alzheimer's disease and cerebellar dysfunction ataxia. He commended me for what I've accomplished in holding off the Alzheimer's disease, but he was not optimistic about the ataxia. He believed that it was a separate neurodegenerative disease, and it would simply continue. I'm having a hard time just giving in to that.
So I was surfing YouTube a couple weeks ago and came across a lecture by another neurologist in Seattle who specialized in cerebellar dysfunction. He spoke as though there were many things that could be done for ataxia, and so I decided I'd like to go see him. My neurologist gave me a referral to see him, and I have an appointment for July.
Does this new guy have a portfolio of treatments that my current care team didn't consider and would heal me? On close examination of their web site and listening carefully to this other neurologist's lecture ... maybe not. He's very positive, but my sense is that he's interested in enrolling subjects for clinical trials for new drugs. We'll see what happens in July.
