A new twist

We did go to Walla Walla yesterday and met with the neurosurgeon.  I gave him a writeup describing my experience to date along with a copy of Beating the Dementia Monster.  He was intrigued by my story, and concluded that I have multiple issues with my brain, not just normal pressure hydrocephalus (NPH), and not just Alzheimer's disease.  

His only role was to help me decide if a shunt would be appropriate for me, not evaluate my disease(s).  Nevertheless, he shared some thoughts with me.  He was cautious in his statements, and I hope I didn't misunderstand him.  

The first outcome of our meeting was that he did not think a shunt would help me much.  The results of the "large volume lumbar puncture" that I got last December were not positive enough to compel him to go in the direction of a shunt.  The next level of testing in situations like mine would be a test involving placement of a drain in my brain with a three-day stay in the hospital.  During the three days they would frequently check my balance and cognition.  He said this is the real gold standard test for NPH.  But insurance companies don't like paying for it, and he thought there was a high probability I would be disappointed in the results.  So maybe NPH is not the main driver for my gait and balance problem.

Consistent with what the NPH expert in Seattle told me back in February of last year, my most significant problem at this point may be ataxia due to cerebelar dysfunction.  This is a syndrome, and there are multiple possible causes.  The most common is "RFC1 associated ataxia."  Aside from speech and gait & balance problems, people with this syndrome often display a chronic cough.  Guess what?  I've had an annoying chronic cough now for more than five years.

So what does this mean?  He said that it does not mean that I don't have Alzheimer''s disease.  My issues with memory and cognition appear to be separable from the gait and balance issues.  I told him that the premise of our book is that I have Alzheimer's disease, and I wondered if I needed to backtrack on that in a new edition of the book ... or a whole new book.  He didn't seem to think so.

But ataxia is a whole new challenge, and I've been studying up on it.  There can be many causes of ataxia, but in my case it appears to be an irreversible, progressive neurodegenerative disease.  It seems right now that I just need to keep doing what I'm doing to help my memory and cognition but recognize that my speech, balance, and gait will continue to deteriorate.  We discussed problems I have with speech in Beating the Dementia Monster.  These problems have continued to come and go, but it's the gait and balance that seems to steadily worsen over time.

When I have questions about physical therapy, I like to go to the YouTube channel of Bob and Brad.   Maybe you've seen them, since they're pretty popular. Well, about a year ago, they published this episode about Bob's diagnosis of ataxia.  At the time, I felt sorry for Bob, but didn't think there would be a connection with my own situation.  Then I saw that they published this update of Bob's condition just last Sunday.  I saw that and then listened to my neurosurgeon ... and I realized that Bob and I are likely dealing with the same thing.  Based on deterioration of his speech, I'd say he's a little ahead of me, but not much.

So how do I feel about this?  I got up this morning and the sun was shining.  I didn't hear any birds chirping, but they're out there somewhere.  I had my morning devotional time and then went to the gym.  Life goes on.