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If Alzheimer's Is So Common, Why the Stigma?

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In 2006, three neurologists concur: My husband has early Alzheimer's.

He is a man of innate elegance, dignity, a very private person, so private that one hesitates to share personal matters with an impersonal public. But Alzheimer's does not recognize elegance, dignity, or privacy. It is the one size fits all disease. Whether you are pumping gas or sitting in the back of a limo; walking the beat or looking down from your penthouse terrace; rocket scientist or rock and roller; fit or flabby: Alzheimer's makes no distinction.

Yet, despite the 36 million people afflicted worldwide, there is still something of a stigma about the label. Just as cancer used to be a diagnosis whispered in close family circles so do many think about Alzheimer's. It is the crazy aunt or uncle locked away in the attic. The first reaction to the diagnosis is often, like mine, denial.

That is why I admire Mel Goodes. Canadian born, Queen's University educated, the former CEO and Chairman Worldwide of Warner-Lambert, Mel was diagnosed with Alzheimer's Disease a few years ago. He has gone public, speaking in many cities on behalf of the Alzheimer's Drug Discovery Foundation (ADDF) about the disease, telling us THIS is what Alzheimer's looks like.

If the Goodes family can take that public scrutiny as the disease progresses through its inevitable stages, so can we. Everyone touched by this disease needs to speak out, because that public pressure is necessary if we are to find a more effective treatment and/or cure for this thief called Alzheimer's.

The numbers are staggering. Over five million Americans now, 700,000 Canadians, with a potential tripling of that statistic when the baby boomers become senior citizens. Can society afford to lose that much brain power?

The drug companies can tell us the cost of bringing a drug to market, but how do we measure the cost of not bringing a drug to market? ADDF -- where I am a member of the Board of Overseers -- estimates that in 2012 alone Alzheimer's will cost the U.S. economy $200 billion.

As to the personal cost, make no mistake. Alzheimer's is a disease of the brain that is paid for in the currency of the heart. The child who will never know that special bond with a grandparent; sons and daughters at their height of their careers becoming parents to their parents; caregivers who give up their lives before their patients do; partners, forced to watch years of love and intimacy disappear, as if they never were.

Over the past six years, in the middle of my night, I have found myself remembering a poem:

"The night has a thousand eyes, and the heart but one,
Yet the light of a whole life dies, when love is done."

Only I rewrite the last line to read,

"The light of a whole life dies when Alzheimer's comes."

Because, although the disease brings in its wake exhaustion and financial stress, the worst, the very worst, is watching that light that animates a human being, in someone you love, go out, bit by bit.

That, and an overwhelming sense of helplessness because so far, there is no effective treatment, no cure.

And there are no survivors.