Although I am not involved in research trying to find a cure,
I am but a retired lawyer with 6 years’ experience fielding the debilitating
effects of Alzheimer’s Disease (AD), I have chosen to not respond to any of the
request for feed-back about NAPA.
I have not because I am but one in a mass whose concern is
secondary to the important ones reporting in on NAPA, just as this article
suggests. As I read it LEAD appears to be a clearing house for all research
ideas coming in from the many different sources professionally involved with
AD. It is one tier on top of many tiers refining and organizing the impact of
all of its subordinates.
I sometimes feel the professionals and the other very
important spokesman have absconded with our disease and we are all lost in the
backwash.
My concern about AD and all of the Dementias is this. I have
it, I don’t want it, but I have learned to live with it. My disease is
classified as atypical AD ‘cuz I still have lots of cognition, memory, I can
read, analyze and write about my experience with this disease and have been
doing so for some years on my Blog: My Alzheimer’s Afterthoughts @ im-mike.blogspot.com. You might call my
background “Empirical.” I do believe I have something to say!
What I have to say is this:
Research to find the cure is important, vitally important to
those who follow us onto this terrible disease’s path. Altruistically research
and finding the cure is important to us too! But on the same plane there are
other matters of equal concern to those of us with AD or the other Dementias.
Dr. Rudolph Tanzi
Professor of Neurology at Harvard University has been recently quoted as
saying:
“By 2015 to 2020,
somewhere in there, there's a tipping point where our healthcare system will
collapse under Alzheimer's alone.” (Are We Near a Tipping
Point in Alzheimer's Disease Research? Alzheimer’s Reading Room
http://www.alzheimersreadingroom.com/2012/01/are-we-near-tipping-point-in-alzheimers.html)
We need help and help can help us, but little help is given
us to help us cope with the disease and prolong ourselves in the early stages
while we remain functional and not an economic drain on our families, community
and Nation. This drain will break the economy of the nation before the
likelihood of finding any cure at which time the funds to do the further
research will dry up short of finding the cure. This is the “Catch 22” of
concentrating on Raising Funds to Find the Cure by Research and doing nothing
else!
Time and effort is needed to institute Programs to Prolong
Early Stage. This together with doing research to find a cure are spokes one
and two of the wheel to overcome AD & Dementia.
The third spoke is doing something about the runaway cost of
care whether it be Home Care, Day Care, Assisted Living Care or Nursing Home
Care. We need to find Economy in Care before that too becomes “Catch 22” of the
plight faced by all of us Afflicted by, Affected by or eventually to become
Impacted by this disease.
Right now the issues concerning NAPA are at war with each
other as to priority of importance.
We need to see the professional cut the crap of infighting
and trying to control the process for their own needs and come down to a
greater altruistic framework!
Bravo!
ReplyDeleteSandy