Health knowledge made personal
Join this community!
› Share page:
Go
Search posts:

Nightline: Why I Got My DNA Tested for Alzheimer's Disease

Posted Apr 02 2009 12:53pm
Tonight on Nightline (ABC), Terry Moran will share his story and reveal why he decided to get tested for Alzheimer's. Just a few days ago, I posted this story-- Alzheimer's Would you take the test? Tonight we will get one man's answers.

I can only hope that Mark Smith is watching--maybe it will open his eyes. This is what Mark Smith had to add to the discussion,
"What do you do with these people once you diagnose them -- apart from frighten them?" asks Mark Smith, a professor at Case Western Reserve University who has been an influential thinker when it comes to the disease.
I doubt that Mark understands that while many of us start out confused and frightened, many of us decide its time to fight. To do something.
I know I'll have tears in my eyes when I hear Terry Moran describes this experience,
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.
Many of us have been there, it is gut wrenching--and you never get used to it.
Subscribe to The Alzheimer's Reading Room--via Email

Facing Alzheimer's: A Personal Story

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.

There is simply too much defeatism around this disease. It is time to stand up and fight. There have been tremendous scientific advances in understanding Alzheimer's in recent years, and there are now scores of drugs being tested to treat and even cure it. After so many years of despair, there is hope on the horizon.

Getting your DNA tested for Alzheimer's is one sure way to become an activist. It's one way to fight. It certainly isn't for everyone, and you should only do it if you believe it is good for your health and your family. But think for a moment: Millions of you will get this disease. Why sit around in fear and denial waiting for it, wishing for a cure? Why not get involved?

Tonight on "Nightline," I'll share with you the results of my test as part of our coverage of today's release of a National Alzheimer's Strategic Action Plan by the National Alzheimer's Study Group.

I hope you'll watch this program. And join this fight.

Bob DeMarco is a citizen journalist, blogger, and Caregiver. In addition to being an experienced writer he taught at the University of Georgia , was an Associate Director and Limited Partner at Bear Stearns, the CEO of IP Group, and a mentor. Bob currently resides in Delray Beach, FL where he cares for his mother, Dorothy, who suffers from Alzheimer's disease. He has written more than 500 articles with more than 11,000 links to his work on the Internet. His content has been syndicated on Reuters, the Wall Street Journal, Fox News, Pluck, Blog Critics, and a growing list of newspaper websites. Bob is actively seeking syndication and writing assignments.


More from the Alzheimer's Reading Room
  • A Simple Three Minute Test Can Detect the Earliest Stage of Alzheimer's Disease
  • Five Ways to Keep Alzheimer's Away
  • Ten Million Baby Boomers likely to suffer from Alzheimer’s during their lifetime
  • Living Alzheimer's From the Front Row
  • High cholesterol levels in your 40s raises Alzheimer's risk
  • Is Alzheimer's a type of diabetes of the brain?
  • Alzheimer's Disease Facts and Figures 2008
  • Is Mild Cognitive Impairment (MCI) an Early Stage of Alzheimer's
  • Is Etanercept the Cure for Alzheimer's
  • A Wonderful Moment in Time--Mom at the Banana Boat




  • Post a comment
    Write a comment:

    Related Searches