Participating in another study -- and the state of the game

The Alzheimer's Disease Research Center (ADRC) at the University of Washington's Harborview Hospital recruited me for a new study.  The people who give me my care at Harborview work in the ADRC, so I was a natural for this.  The name of the study is Clinical Core, and it's been going on for a long time -- several decades.  It's main purpose is to create an extensive database of health histories of people who have some form of neurodegenerative disease as a resource for a range of specific studies.  It also includes tracking of people with normal function who can serve as controls.

The study assesses physical condition of test subjects, testing blood, spinal fluid, and other physiological characteristics known to change with (or characterize) Alzheimer's disease.  It includes annual cognitive testing but not imaging.  

I began this past week.  Due to covid-19 restrictions, there was no in-person activity, and thus no physical testing.  They did conduct an initial, limited cognitive test via Zoom.

So how did that go?  Not as well as I'd hoped, but consistent with my tests from last June.  

I've said before that I have a range of ways in which I self-evaluate, and I'm thinking to make a graph of my experience.  Essentially, it would show a steep decline into early 2016, steady improvement into early 2019, and a bumpy road after that.  The bumpy road would show a drop-off in early 2019 and into the summer, a gradual improvement into early 2020, and a gradual decline to the present.  I believe that where I am now is certainly below where I was at the end of 2018, but perhaps a little better than the spring of 2019.  But my measures tend to be very subjective.  Certainly I am not unable to do any normal tasks requiring full cognition.  I can manage my meds by myself (they are few), and I don't have any trouble with managing finances.  The main things limiting activities I want to do are due to covid risk.

I have now been doing a pretty strict 20 hour fast for a year.  I had hoped this would make a difference, but I have no indication that it has.  But it did do a lot to relive my arthritis, so it's been worth it.  And it hasn't been as hard as I thought it would be.  Once it was a habit, it was easy to maintain.  Now it would seem strange to be eating anything in the morning.  Elderly people (a strange sounding phrase) tend to lose weight, so fasting is not recommended for them.  In my case, I've lost a little weight from fasting, but it's stabilized at a very appropriate level for someone my age.  

My stamina on the treadmill has gone down, perhaps because of the years going by.  I'm still at it for 50-55 minutes per day, but I'm slower now.  I track my heart rate, and I cut back when it gets to my target from the formula we discussed in Beating the Dementia Monster.  I begin at 3.3 mph with an incline of 10 degrees.  That gets me to my target heart rate after 20 minutes.  Then I slow down to 3.0 mph.

In early 2016, a researcher indicated to us that what I've been doing could stall the progress of the disease and add perhaps a decade to my life.  At this point, half of that decade is gone.  And so I'm not surprised by some erosion of my progress -- or perhaps a plateauing.  But I have a long way to go get back to where I was in 2015-2016.  That was when I had trouble remembering my phone number and zip code.

Sleep continues to be a problem, and I've pretty much given up on prescription sleep aids -- doxepin and trazadone.  These leave me too dizzy the following day.  I'll need to get up at perhaps 3:00 a.m. each night and do some things for about 2 hours.  Then I go back to bed and can usually sleep well after that.  I feel well when I finally get out of bed, but the research I've read associates this pattern with a higher level of beta amyloid in blood and spinal fluid.  This suggests that interrupted sleep is bad for Alzheimer's disease.  But Alzheimer's disease also causes insomnia.  So it's a viscous cycle.

Unsteadiness and dizziness continue to be a problem, and I recently went back for physical therapy.  The therapists seem to understand the problems in the brain causing the dizziness.

I don't know what the coming years hold, but I want to be clear that these past five years have been some of the most wonderful years of my life.  It has been quite a journey of exploration and learning -- even when my brain seemed to be trying not to learn.  I wouldn't have missed these years for anything, and I look forward to what's to come.