Monday, September 20, 2010

World Alzheimer's Day—Sign Me Up for a Cure

In today's edition of Small Town Newspaper:


Tomorrow is World Alzheimer’s Day. With dozens of nations participating, it will be a global event intended to raise awareness of Alzheimer’s disease and to remind policy makers around the world of the serious impact the disease will have as the population ages. In France, an “Alzheimer’s Train” will tour the country; in Australia, general practitioners will participate in training workshops; and in Iran, schools and cultural centers will hold seminars.

In the United States, the Alzheimer’s Association has sponsored Breakthrough Riders, a team of bicyclists traveling from San Francisco to Washington, D.C. They have been collecting signatures of people who want Congress to make Alzheimer’s a national priority, and tomorrow they will arrive at Capitol Hill armed with nearly 100,000 signatures calling for “yes” votes for the Alzheimer’s Breakthrough Act.

This event is global because this disease is global, and it will only grow in its threat to our quality of life as we live longer and longer. In the U.S. alone, more than five million people have Alzheimer’s, and 11 million people serve as their caregivers. Every 70 seconds, another person is diagnosed with what is the seventh leading cause of death in the U.S. Alzheimer’s disease currently costs us $172 billion annually, and by the year 2050, as many as 13.5 million Americans could be afflicted.

Alzheimer’s disease affects men and women from every race and nationality, but general statistics aside, for me it’s personal. My father and my father-in-law both died with the disease, and as far as my family is concerned, the clock is ticking for finding both a cure and firm information about prevention.

When we were first told of my father’s diagnosis, I remember thinking we were in for something bad, but I didn’t know to what extent my family would suffer. I lived hours away from my parents, so I did not carry the burden to the same degree as my mother and sisters, but what I saw from a distance and what I experienced during occasional visits was a heavy load to haul. The first time my father forgot my name and my face, the first time he failed to recognize my children, the first time he became agitated in a way I had never seen were like fresh new blows.

My father had always been physically strong, but with this disease, he became weak and unsteady on his feet. He was a fierce protector of my mother, but as his brain morphed, he became increasingly dependent on her. He would repeatedly ask for water or food or people from his past, often wanting to visit his mother who had died years before. And over and over again, he would ask when he would be allowed to go home, because wherever he was at the moment, whether in his own chair or at his own kitchen table or his own bed, it surely wasn’t where he belonged.

More than anything, home is what he wanted, and I remember my mother saying, “Imagine how terrible it must feel to always want to go home and never being able to get there.” You know you want something, something attached to a hazy memory or a distant sense of wellbeing, and it eludes you every single day. You wake up with it, and you fall asleep with it, and it gnaws at you constantly.

This is how I sum up Alzheimer’s disease. It’s not just about losing memories or feeling confused. It’s more than a change in personality and a loss of motor skills and inhibitions. It’s a deep longing for the familiar in a world where everything is alien, and relief never comes. I know of no other disease as cruel and as insidious, and for my family and millions of others, as ominous.

The whole world is in need of a solution to one of our worst diseases, and tomorrow when trains and seminars and fund-raisers call attention to this need, my name will be on the petition delivered to Capitol Hill. In memory of my father and father-in-law and for the sake of my family, I am asking that we all make tackling this disease a priority.

To sign the petition sponsored by the Alzheimer’s Association, visit www.alz.org.

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