Balance and sleep

I'm usually torn between how much to report about myself and how much to keep private.  I want to tell enough about how things are going with me to give others a roadmap of what they might expect if they have my experience with Alzheimer's disease and do what I do.  On the other hand, I tend to be a fairly private person and don't always want details of my life going out.  So, weighing those two factors, I continue sharing what I hope people will find helpful.

In Beating the Dementia Monster, we said that balance problems were the first clue I had that something was wrong.  The neurologist first ruled out a brain tumor (such as my grandfather had), but later diagnosed me with Alzheimer's disease.  He sent me to physical therapy where the therapist said that the balance problems resulted from the death of parts of the brain needed to interpret information from the vestibular system in the ear.  He taught me very effective "habituation exercises" that have helped me to regain balance.  For several years, I would do the exercises every few days to keep my balance tuned up.

Sleep and Alzheimer's disease are interrelated in an unfortunate way.  As we discussed in Beating the Dementia Monster, poor sleep promotes and may even help cause Alzheimer's disease.  But Alzheimer's disease also interferes with normal sleep.  So there is a viscous circle.  Poor sleep promotes Alzheimer's, and Alzheimer's causes poor sleep.

When my trend of cognitive improvement stumbled in April 2019, my neurologist in Seattle attributed this to emerging problems I was having with insomnia.  Over the next year I had some success in improving my sleep, and I believe this largely stabilized my cognition.  As things stand at the moment, I have no recurrence of the troubling things that appeared at the beginning (e.g., couldn't remember important things like phone number and zip code), nor those that appeared in April 2019 (e.g., repeatedly couldn't remember to lock the car door, even when thinking of it while parking).  

I'm comfortable with where I am cognitively right now.  I can manage my own meds, I can manage finances, I can find my car in a big parking lot, etc.  When I test myself with random word recall or mental math, I feel well about the results.  Throughout my experience there have been stumbles, but I continue to follow the elements of the Dementia Toolkit, and I seem to recover OK in the weeks or months following a stumble.

Balance is a different matter.  I noticed some months ago that the habituation exercises seemed less effective.  In the past they could erase transient balance and gait problems, but the exercises were becoming less effective.  I began to fear that I might fall, although I haven't so far.  (I had one strange event about three years ago when I rose from a chair and couldn't move my leg.  After falling, we went to the ER, but they couldn't find anything.  This has not recurred.)

The balance problems have become scary.  To do the wildlife photography that I enjoy, I need to scramble over rocks and climb hills with my equipment.  These have become riskier and more difficult.  I worry that I will have to stop doing these things for the rest of my life.

I saw my primary care provider, who sent me for some new therapy with new habituation exercises.  During intake evaluation, the therapist observed my gait and said that it showed evidence of damage to the basal ganglia.  The basal ganglia are associated with both voluntary motor activity (like walking) and cognition.  

After beginning the new exercises they gave me, I began to wonder if there wasn't another cause for my imbalance.  Perhaps some new meds I'd been given for prostate were the problem?  

To make matters worse, my insomnia got much worse (likely due to both aging and progress of the disease), and the strategies that had been working to give me a better night's sleep stopped working.  Until recently, I would wake up every night at about 3:00 a.m.  But if I got up for about two hours, I could go back to bed, fall asleep, and feel well after arising later.  But more recently, I could not get back to sleep at all, and I was exhausted all day.

So I approached my sleep doctor about finally trying a pharmacological approach to insomnia.  My neurologist in Seattle had suggested trazadone, and my sleep doctor tried this among two other medications.  He tried different medications, because all were causing dizziness and were counterproductive to my work with the physical therapist.

The sleep meds have helped a lot with this, but with two of them, I will still wake up during the night.  At least I can now easily go back to sleep two hours after an episode of insomnia and feel well during the day.  For the moment, I've settled on the medication which causes the least dizziness, and I don't use it the night before I have physical therapy. 

The question remains as to whether I can navigate the sleep and balance issues together.  This is an ongoing project.

Meanwhile, I have now been doing a 20 hour/day intermittent fast with very few interruptions for over a year, but I have no way of determining the effect it has had on cognition.  There are just too many other variables that could be influencing it.  I feel well about the fasting, but the obvious question is what role it might play in balance or insomnia.  By all reports, the fasting should be helpful on both fronts.  Also, if fasting was going to cause a problem, the problem would have shown up long ago.  I plan to continue the fast for the foreseeable future, without knowing how much it's really helping.