The source of this article is the Portsmouth Herald: http://tinyurl.com/c66lj

Living with Parkinson's

By Elizabeth Kenny
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KITTERY POINT, Maine - Martha Kowal is still waiting for a cure.
It's been 12 years, and Kowal waits for a medication that will allow her
now-rigid movements to quicken; she is waiting for a remedy that will allow
her to lace her tennis shoes and get back on the court.

Kowal longs for a cure to break the "spell" of Parkinson's disease.

She first told her story to the Portsmouth Herald five years ago, when said
advocacy was an easy choice because it involved her future.

"I'm ready for a cure," she said in a 2000 Portsmouth Herald story.

But Kowal - along with the 1.5 million Americans who have Parkinson's - are
still waiting.

Parkinson's disease is a brain disorder that occurs when nerve cells that
produce dopamine become impaired, according to the National Parkinson's
Foundation Web site. When the majority of dopamine-producing cells are
damaged, the symptoms of Parkinson disease - tremors, rigidness, lack of
balance - begin to appear.

More than 60,000 Americans are diagnosed each year.

"What's frustrating is when I was diagnosed, I was told in a few years
there would be a cure. It's been 12 years. There's no cure. ... It gets
more discouraging the older you get."

But instead of wallowing, Kowal remains positive, along with her family and
friends who keep walking and waiting for a cure.

Life-altering diagnosis

A friend first noticed that Kowal had stopped moving her arms when she walked.

Kowal, who once worked as an insurance investor and played competitive
tennis, was writing her Christmas cards 12 years ago when she decided it
was time to see the doctor. Her handwriting had become so small she could
barely read it.

She was 48 years old when the doctor looked at her and said, "You have
Parkinson's disease."

"It was like (being socked) in the gut," Kowal said.

During an interview at her home along Spruce Creek, Kowal's right leg
jiggles once in a while, slightly tapping the coffee table in front of her.

"This is a good day right now," Kowal admits.

On one of her worst days, it takes nearly three hours to get dressed.

And it's those little things, the things most of us take for granted, that
act as reminders.

"I exercise and walk, but the disease still continues," she said.

She takes what she calls a "cocktail" of pills to try and stop the symptoms
and hopes for more good days than bad.

But even these stories she tells with a smile, accepting it as her way of
life.

Walk on

It's a disease that could drive someone into a deep, dark depression, but
that's not Kowal's style.

Instead, her friends turn to her for inspiration, a good laugh, and three
times a week a walk through Fort Foster.

On Saturday, Kowal and her daughter, Katie Crawford, participated in the
11th annual Parkinson's Unity Walk, the largest grassroots fund-raiser for
Parkinson's research, in New York City.

There's a cure within reach, many say, but it will take the will and
monetary support.

It's obvious Kowal and Crawford have the will - they just needed others'
support

"For those of you who know her, you know that she is an amazing woman and
deserves the chance of living without this disease," Crawford wrote in a
letter to friends and family to help donate to the Unity Walk.

Last year, that letter helped generate $10,000 to find a cure.

"It was a great response and my mom kept saying I was so wonderful, but I
remind her that they are giving me money because you're so great," Crawford
said in a phone interview from her home in Philadelphia.

Crawford wasn't always so open about her mother's disease.

"Katie came a long way," Kowal said. "At first, she couldn't talk about it
... but she gradually started sending me an article on the disease or would
call me about a TV program."

Now she's helping find a cure for her mother.

Here in Kittery, Kowal's friends are doing the same.

Three times a week, Kowal and a group of women walk throughout waterfront
trails, beaches and picnic areas.

"We walk at different paces. Martha walks a little more slowly," said
Kowal's' friend A.M. McCurdy. "But she doesn't let it stop her - no way."

Another walker, Marcia Gibbons, describes Kowal as "a wonderful, upbeat
person."

"It's a horrendous thing to watch her struggle with minuscule things that
none of us even think about," Gibbons said. "We would all love anything
that would make her life easier."

Search for a cure

Portsmouth Regional Hospital internist Timothy Pike said Parkinson's is one
of many movement disorders that can cause rigidness in the hands and
muscles, a shuffling gate and a gradual slowness.

A healthy person's brain is wired so that movement is very controlled, Pike
said. To put it simply, a person with Parkinson's has a wiring malfunction,
and as time goes on, the disease advances.

A person doesn't typically die from Parkinson's, but rather from a symptom
or symptoms of the disease, Pike said.

It's important to recognize the progress and research taking place, Pike
said, including here in New England.

One form of research that seems the most promising involves stem cells. But
stem-cell research, often using embryos, is also controversial.

Stem cells differ from the other cells in our body because they do not yet
have a specific purpose, which means they have the ability to change into
other types of cells.

Those who oppose the research cite concerns about the use of embryonic stem
cells because harvesting these cells results in the destruction of the
human embryo.

During the most recent presidential election, the issue of stem-cell
research became a hot topic.

But for Kowal, it wasn't some obscure idea or political agenda, it is her
life.

"I can't think of anything more pro-life than stem-cell research," she
said. "I want to go back to play tennis."


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