Where I'm at...

With so much of my time being eaten up by insomnia and so many things going on in my life (for example, an upcoming wedding...) I haven't written as much as I'd like about how things are going with me.  So I'd like to catch up on a couple of things.  And there have been a few things worth writing about.

You'll recall that a year ago I was diagnosed with cerebellar dysfunction (CD) in addition to Alzheimer's disease.  This is another degenerative brain disease, but it's not as well defined as Alzheimer's disease.  In fact, I'd call it more of a syndrome -- a set of symptoms -- with multiple possible causes.  Some causes are hereditary, some may be due to dietary deficiencies, and other causes are simply unknown.  (If the cause of a disorder is unknown, it's called idiopathic.) 

Right now, this is a much bigger deal for me than Alzheimer's disease.  The Alzheimer's is very much under control, but the CD is not.  The main consequences of CD for me have been serious balance problems, as well as minor problems with my speech, handwriting, and a few other things.  If fact, one sleep specialist said he believed it was causing my insomnia.  The balance problems interfere with most of the things I want to do.

On YouTube, I found an expert on CD in Seattle who seemed to be well respected in his field.  I was able to get an appointment to see him, which wasn't easy.  But I did see him in July.  After a comprehensive exam, he ordered another MRI, which I've gotten.  But it won't be until November before I can follow up with him.  I did read the radiologist report, but wasn't able to gain much insight from it.

During the exam, he seemed optimistic about doing something helpful.  But, as he looked more closely at my condition, he seemed to be leaning more and more toward an idiopathic diagnosis.  Aside from the physical therapy I'm already doing, there's probably not much more to be done.  I guess I'll get a final prognosis in November, but I'm not optimistic about turning anything around.  And CD is progressive.

As far as memory and cognition go, I actually believe I've had recent improvement.  For two years I've been participating in a memory tracking study from the University of Washington Alzheimer's Disease Research Center (ADRC), and I've also been followed by the University of California San Francisco (UCSF) Brain Health Registry.  For the ADRC tracking study, I've taken a brief memory test every week for two years.  For the Brain Health Registry, I complete a comprehensive questionnaire and take a memory and cognition test every six months.  Because these are controlled studies, I'm not privy to results.  But, for both studies, I am told whenever I get a question wrong.  I therefore have an intuitive sense for how I'm doing.

At the two year mark last month, I completed my participation in the ADRC study.  The test questions were straightforward, usually testing short term memory.  Each week, there would be a topic.  For example flags of Caribbean nations.  The test gradually introduced me to the flags of one nation after another, and I'd need to recall which flag was for which nation.  The test question answers were multiple choice.  My sense was that I did about the same throughout the whole two year period.  Not perfect, but respectable.  Which is, of course, good.

The UCSF tests were a lot harder.  It's hard to describe, but you needed to remember some very weird little figures and how they were arranged (and hidden) on the screen.  You start out remembering the locations of two figures but work you way up to eight.  I took these tests over the period of a several years, every six months.  I believe that, on the test I took a year ago, I got zero right on the top two levels.  So I just skipped the test six months ago, somewhat in discouragement.  I remembered looking at the little figures a year ago and being totally baffled at how to correctly respond to the test.  I probably did OK, with two figures, but with four, six, and eight ... not at all.

Well, I thought UCSF had given up on me, but they hadn't.  I got an inquiry from them last week, and I took their test on Saturday.  I was absolutely amazed at how well I did.  I got all the way to the top level (eight figures), and got them all right on the second or third try.  I couldn't believe it.  What was amazing was just how I felt when taking the test.  A year ago, I would just look at the screen and see nothing meaningful.  I couldn't even remember what the little figures looked like.  This time, when I looked at the screen, I had relatively little trouble remembering what the figures looked like and where to place them.

Why should I suddenly be doing better?  I don't know, but this was the day after my first acupuncture treatment.  Peer reviewed studies have definitely associated acupuncture with improved memory and cognition, and maybe that's why.  On the other hand, my Fitbit tells me that, the night after that first treatment, I slept much better than I normally do.  So maybe it was just a matter of sleep.

For the two nights following the acupuncture treatment, my sleep quality was better than it's been in years.  I still woke up in the middle of the night.  But it was much easier to get back to sleep, and I was able to sleep longer.  

But after two nights of that, the spell was broken.  Subsequent nights were just as difficult as they've been for a couple of years now.  

I'm looking forward to my next treatment tomorrow.  The most important study I read with good outcomes had test participants receive at least six treatments over a one to three month period before they drew conclusions.  I'm hoping that more and consistent treatments will have a more lasting effect.