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Husband walks for wife's cure

Posted April 27, 2010 11:00 pm

And to get the word out about Huntington's

Each weekend thousands of people take to the streets of our communities, walking and running to raise money for charities. Every one of them has found a cause to believe in, a bit of hope through helping. And every one of them has a reason for being there.

Today, Daniel Born of Chicago describes how Huntington's disease consumed his wife. He'll walk in her honor Sunday, May 16, in the Walk for a Cure at Danada Forest Preserve near Wheaton.

My wife, Mary Classen Born, is the reason my family participates in the HDSA Walk for a Cure in Danada Forest Preserve near Wheaton. Mary was diagnosed with Huntington's in 1996 when she was 40 years old. We were not blindsided by this; Mary's mother had died of the disease five years earlier. Still, it was a shock to hear the neurologist tell us the bad news.

At the time, Mary was a successful family therapist and psychiatric social worker. Our daughter, Liz, was 7 years old. Mary and I did not immediately share the neurologist's diagnosis with our friends. Always a dedicated professional, Mary worked three more years. At that point, she was having trouble managing a computer keyboard. Her driving had become dangerous. It was time to retire, and she did so in 1999.

We have been walking for the cure since we moved from Marietta, Ohio, to Chicago in 2001. Joining with this community of people for the walk is both a sobering and uplifting experience. Sobering because it is a reminder of the devastation that Huntington's visits on its sufferers and the families of the afflicted. Uplifting because the simple act of walking together is a collective statement of will, of pressing forward together, dedicating our time and resources until a cure for the disease is found. We will not stop until that happens.

Huntington's is a rare genetic neurological disease. An estimated 30,000 people in the entire United States suffer from it. But it's quite possibly the worst of what clinicians describe as the family of "movement disorders."

HD can be best understood as a combination of the symptoms of Alzheimer's and Parkinson's. It destroys the brain, diminishing the ability to think, to talk, to eat and to coordinate one's movements. It is gradual but inexorable. HD sufferers often die from falls, accidents or aspiration pneumonia due to problems in swallowing and eating. There is no known cure.

If your mother or father has Huntington's, you have a 50-50 chance of inheriting it. And like other rare neurological diseases, it has its poster boy for the illness. ALS has the Iron Horse of the Yankees, Lou Gehrig. Parkinson's has actor Michael J. Fox. Huntington's has Woody Guthrie, this country's greatest folk singer ever, who wrote "This Land is Your Land, This Land is My Land" before his life was wrecked by the illness.

The successful fight against HD means getting the wider public's attention. This involves a lot of education. The clinical research that may lead to a cure for Huntington's almost certainly will have a bearing on other neurological diseases as well. Helping people understand that is vital to building the kind of support needed to do the medical research.

Already much progress has been made in treating HD's symptoms. The gene for HD was discovered in 1993. Now we are on the cusp of understanding what goes wrong in the brain at the level of actual DNA protein. And that means finding a cure, intervening before the damage to the brain begins.

Mary is still able to walk. Liz and I are grateful for that. Twenty years ago Mary was a runner, and it took everything I had to keep up with her on our regular two-mile run on the Palisades above the Hudson River, just across from New York City. Seven years ago we took our last trip to Europe. By then, Mary was in the grip of the disease's physical symptoms.

But she still had her sense of humor and her wit. One night, looking out from our hotel balcony at the twinkling lights of the Eiffel Tower, she recited her favorite line to me from the movie "Casablanca": "We'll always have Paris." And I said, yes, we will.

But Huntington's has a way of laying waste to inspirational stories of plucky courage and heroism. One year ago, Liz and my brother, Mike, and I made a hard decision. The moment had arrived for Mary to move into full-time nursing care. She could no longer feed herself and the stress of physically taking care of her had become overwhelming for me.

On the morning of May 1, 2009, I drove Mary to her new home in Niles. All I could think was, "May Day, May Day, May Day."

If I was in turmoil, Mary was composed. On the fifth floor of Regency Rehab in Niles, she introduced herself once again to the staff who had interviewed us in the weeks previous.

"Hello, my name is Mary Classen Born," she said, extending a firm handshake to her new caregivers. She was so serene and in command that I almost had second thoughts about this decision.

When she said goodbye to me, she was sitting in the recliner chair in her new room. The look she gave me was uncanny. Then she lifted both hands the way her father, a Mennonite minister, used to do when he gave the benediction. And she said, "Blessings on your house."

This is why I walk.

If you go

What: Huntington's Disease Society of America's Walk for a Cure

Why: Proceeds fund research into a cure for Huntington's disease and services for sufferers and their families.

When: 10 a.m. Sunday, May16; registration opens at 9 a.m.

Where: Danada Forest Preserve, Naperville Road south of Butterfield Road, Wheaton

Cost: $20

Donations: HDSA Illinois Chapter, P.O. Box 8383, Rolling Meadows, IL, 60008

Info: <a href="http://hdwalk.org" target="new">hdwalk.org</a>

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