NAPA and the National Plan—Is Your Input Getting Through?

(A very interesting article was posted today on Alz Research Forum entitled NAPA and the National Plan—Is Your Input Getting Through? for which comment was asked. The following is my comment. The article can be seen by clicking it's title or clicking ARCHIVE to go there where I have posted it)

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!