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January 09, 2010

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Danny George

Mona, thanks so much for this great insight into the tone/content of the meeting. This feels like a tough transition period, not unlike the awkward stage of a dissolving relationship where you know things aren't going to work but have trouble letting go b/c your heart is still in it.

The old models just aren't sufficient any longer. Speaking about a singular disease caused by plaques and tangles is just conceptually off. The language has to shift to a more syndrome-based understanding of Alzheimer's-type "diseases". It seems like we are moving that direction, slowly, but it's hard to let go the high hopes for a singular cure.

Best wishes

Mike Donohue

MONA: This is an excellent post. It prompted me today to post it on my Blog:My Alzheimer’s Afterthoughts! http://im-mike.blogspot.com/ along with comment and hyperlink to "Tangled Neuron."

What turned my crank on reading your post is the concern I have long had and see as an undercurrent with many of us afflicted with AD. So much more is needed than the seemingly futile effort to raise more money to find a cure that seems to escape detection. There is so much more needing to be done to help everyone affected by this disease and save the community the eventual cost of warehousing us.

My comments are these:

For Too Long And With Too Much Emphasis, Finding The Cure Has Been Oversold!

I have contended repeatedly on this Blog that we should start to concentrate at least half our effort on Finding Better Care, Improving the Quality of Care, Minimizing the Cost of Care as Finding the Cure. Look at the chronology of essays on the left hand column of this Blog. It has been an issue I have consistently raised here in the past.

I have suggested this in numerous essays about:

• The need to give equal emphasis to care as cure.

• I have been disturbed with the over-concentration on raising money when Cost of Care is so critically confiscatory to so many of us affected by this disease.

• When Quality of Care too often is consistently substandard.

• I have bemusedly wondered could this be just another of the silent agendas in misguided effort promoted by the drug industry duping the groups purportedly supporting those affected by AD.

So little is being done to alleviate the tragedy to those affected by this disease as its occurrence is escalating into epidemic size!

They say “Let’s get a cure!” Too often this is the only effort seen in organized activity supporting AD. This is no help for me and all the rest of us affected or afflicted. Where are there national, regional and local efforts to help people cope?

To help people work at remaining functional in the myriad programs that could be made available and save money in the long run.

Where does one with AD go? Going to the Doctor and getting told “Take this and call me in a year!” That is just not skinning it!

Is a cure possible? I’ll let you know should they find one. Until then? They say they are looking in all the right places, doing the right things, certainly sooner of later something will stick to the wall!

Look at all of the other disingenuous promotions by the Pharmaceutical Industry. Every where you look they seem to be taking the public to their personal advantage, all for profit. I wonder if this effort is but one more ploy. I wonder if success is stymied by their need to keep shuffling testing to fund their infrastructure, lobbying, advertising, and profit production.

Why are all of the efforts caught in the trap “we need to raise more money, we need to find the cure?” There are so many other things needed more.

I have posted an article in my Archive entitled Alzheimer's Research: Starting Over which was carried on an excellent Blog: The Tangled Neuron. It is worth reading.

We could be found to be going on so many wrong paths. There is no real coordination of effort, classification or programs to help. There is little than money going into research and nothing coming out!

Richard

Hello
once again you have given the gift of a clear eye and mind to an increasingly foggy situation - the quest for the cure for Alzheimer's Disease. Thank you for reporting and drawing attention to the the Penn State conference. I continue to depend on you for your balance, wisdom, and clarity.

Richard

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