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January 31, 2011

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Mary Kay Baum

I agree that a lot depends on the definition of survival and of Alzheimer's disease. I know of no person who, after she was somehow definitively diagnosed as being in very late stage Alzheimer's disease, suddenly woke up with no hint of Alzheimer's and went on to live Alzheimer's-free for years to come. But highlighting that peculiar concept on the top of the Alzheimer's Generation Report is false hopelessness. It misses the real challenge to our baby boomers. Many scientists recognize that what we call Alzheimer's is a range of chronic syndromes to be managed, rather than a sudden acute condition to be cured. Let us work together to explore ways that this generation can live well with Mild Cognitive Impairment (MCI) of probable Alzheimer's etiology. Let us learn how to reduce the risk that MCI, or even subclinical Alzheimer's, will decline into late stage dementia Alzheimer's. Many are reducing symptomology and maintaining good quality of life. To me, survivors are persons who have had medically documented cognitive decline, but who have stabilized or reduced their symptoms in time to prevent becoming demented. I hope that I am a survivor, but only time will tell. My survival does depend upon my medications, nutraceuticals, and my lifestyle, but even more so on the health of the planet. And for a clean environment I depend upon the work of many. That is my challenge to my fellow Boomers. We should not be the Alzheimer's Generation. It is a matter of life or death that we become the Wellness Generation, wellness for individuals, all communities and the earth. That is how we all survive.

Don Moyer

Since Alzheimer's is diagnosed by a pathologist's examination of a brain after death, Alzheimer's is always fatal -- by definition.

The scandal is that pitifully little is spent to help people live well with various symptoms "diagnosed" as probable Alzheimer's or probable dementia of some other sort.

oran

This terrible statement reminds me of my father complaining that everyone he knows who went into an assisted living or nursing home eventually died there... so according to the Alzheimer's Association's logic, there should be a warning about assisted living and nursing homes - "that there are no survivors - none."

Mary Kay I applaud your willingness to share with us your own situation and the reasons why this statement should be removed. I totally agree with the importance of prevention and taking care of our planet . I wish that the funds collected for research were also used to educate people about the importance of their lifestyles in preventing not only cognitive loss, but most health challenges.


C

The statement itself is correct. To date, there are no survivors of this awful disease. You can have a great quality of life until your death, but AD is fatal. If we try to paint a rosy picture about how wonderful our live are until we become debilitated, we take away from the power and reality of the fact that AD kills everyone it infects. So, rather than argue with semantics, let's focus our energy into a cure, so that someday we CAN say "yes, there are survivors".
Also, take a look at the newly published research at the University of Texas Health Science Center at Houston that found that some AD may be contagious via infection, and similar to Creutzfeldt-Jakob disease.

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