5-18-2021
Since
I have written a number of blog articles in the past on this topic as well as a
book,
it seems appropriate to provide some type of status report for anyone who is
interested. I am grateful that I have received so much positive feedback
regarding my decision to talk openly on this subject.
When I was writing the cognition-related book a few years
ago, I talked about how this subject was typically being avoided by PD doctors
and was not a major focus for research.
This seemed odd since it had become apparent through interaction with
PWPs and care partners that this was the single issue that MOST concerned them. I am happy to be able to say that this is no
longer true! Along with non-motor issues
in general, cognition has become a major focus and is being discussed by
doctors, in seminars, and by the national PD organizations. The Michael J. Fox Foundation has made
cognition a major priority for research funding and the Parkinson Disease
Foundation (PDF) has selected it as one of two subjects (cognition and
dystonia) for their 2016 Community Choice
research awards.
Unfortunately, this has not translated to major
breakthroughs in PD-related cognition research.
There is a clinical
study in progress at Georgetown that showed promise in phase I using
a leukemia drug (nilotinib) that, based on feedback I have heard, no longer
seems promising. I am still hopeful that
research involving alpha-synuclein
will produce breakthroughs related to Parkinson’s disease dementia (PDD), Lewy
body dementia (LBD/DLB), and PD in general.
Regarding my personal journey, it is apparent to me and my
faithful sidekick (my wife and care partner, Linda) that “strange things are
afoot at the Circle K” (Bill & Ted’s
Excellent Adventure). I don’t try to
“brand” my condition beyond the amnestic mild cognitive impairment (aMCI)
diagnosis I received in 2011. My
strategy for “keeping my act together” as well as possible is to remain engaged
physically, mentally, and socially and continue taking my cognition meds
(Exelon patch & Namenda) and supplements (Vitamin D3 & B12, COQ10,
herbal laxative, and melatonin). As I
have said before and will continue to say, I am blessed to know that whatever
happens will be in God’s Hands.
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