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

Posted: 09/14/2012 11:20 am

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.

 
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grinningdog
02:48 PM on 09/17/2012
Alzheimer's doesn't just affect the person with the disease, it affects everyone around him too. My dad, now 78, was diagnosed several years ago, and we've sadly watched him deteriorate. My mom has been taking care of him on her own but it seems to have made her bitter and resentful. We've tried to coax her to get help, join support groups etc. but she refuses. It seems that she wants his disease to be her cross to bear.

This weekend I'm running in the World Alzheimer's Day 'Run For Heroes Marathon in Amherstberg, Ontario, to raise money for Alzheimer's. It won't help my generation or even that of my children, but perhaps it will help their kids.
07:38 PM on 09/21/2012
MY heart goes out to you and your family......and thank you for running in the Run, you are right, the greatest gift we could give to the next generation is more effective treatment and/or a cure. I am so sorry that your mother won't accept help. We bring to our caregiving role, who we are, and what the relationship was.....don't give up on trying to get her to take a break....I resisted that too, but my children finally made me realize that I needed to get away occasionally...you are all in my heart.
03:32 PM on 09/14/2012
This is a tragic disease that will claim the minds of so many more people. More than 20 million people in North America will be living with Alzhiemer's within the next few decades and yes no cure in sight as yet; but early detection holds promise. If the changes in brain function can be detected in the earliest stages, we may have the opportunity to discover clues to causation and to find therapies for staving off the progression.
08:23 PM on 09/14/2012
You are quite right....the greatest gift we could give to the next generation would be more effective treatment and a cure...and there is hope on the horizon....I will be talking about some of the exciting research in subsequent blogs.....
12:17 AM on 09/18/2012
Nice. I look forward to it.