Facing Alzheimer's: A Personal Story

Terry Moran was tested for the Alzheimers gene

Alzheimer's disease is a looming public-health catastrophe.

Every 70 seconds, someone in America develops Alzheimer's; by midcentury, it will happen every 33 seconds. Right now, more than 5 million Americans are living with Alzheimer's, and as the baby boomers age that figure will skyrocket and the costs connected with this disease will reach into the tens of trillions of dollars.

The math is merciless: According to a report being released today by the National Alzheimer's Study Group, about one in seven of us will get Alzheimer's by age 65. By age 85, you have about a 50 percent chance of having the disease. Think about it.

I did. I know I might well become one of those statistics. Alzheimer's runs in my family; my mom died of the disease and so did my grandmother. Like millions of Americans, I know the pain of losing a loved one to Alzheimer's.

My mom, Margaret Louise Moran, had 10 children and lots of grandchildren and she led a joyful and active life until she was stricken by Alzheimer's in her mid-60s. I saw her descend, in fear and rage, into the hell of forgetting and confusion and the total loss of identity the disease brings.

The worst thing for me, I think, was that I could tell my mother knew what was happening to her; she had watched it happen to her mother. She was terrified as the disease tore apart her mind. I remember sitting with her one morning, for hours, as she said over and over to me, "I want to kill myself. I am going to kill myself. I wish I could kill myself." For hours. My mom.

So I know the heartbreak. And I know the fear -- the fear that what happened to my mom might someday happen to me. Or worse, to my daughter.

I decided it was time to face that fear, to take action and take responsibility for my health and my future. I wanted to do something that would mark a personal and irrevocable commitment in my fight against Alzheimer's -- a political act in the form of a medical decision. I decided to get my DNA tested to see whether I carry any of the genetic markers that have been linked to Alzheimer's disease.

The test would not tell me definitively whether I would or would not get Alzheimer's. It's not a rock-solid predictive test. It's not a diagnosis. It's not my destiny. Instead, like most new genetic tests, it would provide statistical information about my innate risks for this disease (and others). It would help me plan my future, to choose a healthier lifestyle, arrange for long-term care or look to get into clinical trials.

Taking Action Against Alzheimer's

So I did it for my health, and to take responsibility for my life. But I did it also for a political reason. I believe the only way we are going to defeat Alzheimer's is through passionate political advocacy -- that's what works in this country to mobilize public support and public resources to fight diseases. Think of the courage and commitment of those who have led the struggles against HIV/AIDS or breast cancer or other afflictions. They raised their voices, they made us listen.

But the victims of Alzheimer's cannot speak for themselves as the disease takes them from us. They cannot march or testify or write books. And there is a sorrowful stigma attached to Alzheimer's; it is a private ordeal, spoken of in hushed tones, shunted away in care facilities or behind closed doors where exhausted family members keep silent about the deepest indignities and worst horrors they witness and endure. And so the advocacy suffers.

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