Parkinson's disease support group urged

By STEVE MARRONI
Evening Sun Reporter

Carolyn Stephenson was working her way up the corporate ladder, putting in 50-, sometimes 60-hour weeks at the office. She worked in human resources and employee benefits in Florida, and will never forget when one of her interns pointed something out, something she had never really paid attention to before.

"She noticed a tremor in my thumb," Stephenson, 59, said.

She was 45 years old at the time. Too young to think she would have to retire soon. After about 9 months of visiting physicians and specialists, and a little research on her own, Stephenson learned she had Parkinson's disease.

Stephenson now lives in Gettysburg, coming to the area in February 2007 to be with her daughter, who has an autistic son. One thing she discovered that's missing is a nearby support group. While there are groups in Hanover, Mechanicsburg and Chambersburg, that may be too far away for some patients, especially the elderly with the disease.

So, she is trying to form a Parkinson's disease support group in Gettysburg.

It would be a community, a group to talk about dealing with the disease, and help each other where ever they can. But, she wants it to be more. She sees it as a place to learn more about research and about clinical trials. She hopes to have speakers come in, and have demonstrators teaching yoga, tai chi and exercise in general - a necessary thing for many.

Her goal is to have the support group eventually become affiliated with the National Parkinson Foundation.

Living with Parkinson's

Parkinson's is a degenerative disease, starting off with minor symptoms, and just getting worse with time. Stephenson described it as a designer disease - symptoms are different for everyone. There is no known cure, and researchers still do not know exactly what causes Parkinson's.

Shaking and twitching are often associated with Parkinson's. It started in Stephenson's thumb. Now, her arms and hands tremble.

"I'm very fortunate that it's been slow," she said about the progression of her tremors. "It hasn't been so problematic. I'm very independent, and can still drive a car."

The tremors can be really bad sometimes, she said, but she still considers herself to be lucky.

"A lot of people, after 20 years with Parkinson's, are either deceased or in assisted living," she said.

Medication helps, but there are "on and off days," as patients often call the days of more or fewer symptoms.

In more extreme cases, patients can become rigid, and even freeze up, along with their tremors. In her early research, Stephenson discovered there are symptoms affecting more than motor skills. She didn't realize until that moment that she, over time, had lost most of her sense of smell. She can smell strong odors but, like losing one's eye sight, it's not immediately apparent.

After she was diagnosed, Stephenson still worked her way up in her job to a middle-management position in human resources. The symptoms slowly became apparent - the tremors, a more hunched-over stride - but she was determined to continue with her life, and not to be embarrassed by Parkinson's.

It wasn't the physical deterioration that got to her.

"Most of us end up with cognitive issues," she said. "Like the ability to organize, and to think on your feet. You know the word you want to say, but you can't spontaneously get it out."

She kept files of projects layered on her desk, and would check them often, to make sure she wasn't forgetting something. She was always paranoid about missing a meeting, but she kept it together for several years.

Then, in 2000, she went on the road with the benefits department for a month of presentations.

She had trouble juggling the road and the responsibilities of the office that still followed her, and missed getting out information on a benefits package.

"That was the first time I was ever called on the carpet for something like that," she said. "It was a horrible feeling."

She managed to get everything printed and out to the employees, but saw the lapse as a sign of worse things to come. She got back from the road on April Fools' Day, and handed in her resignation.

She took a lower supervisory position, then eventually left the company on long-term disability, ending her career at 52.

Crossroads

There comes a time when you have Parkinson's that you have to make some decisions, like reaching a crossroads.

One is you have to realize your future is not what you envisioned it to be.

"I never thought I would retire at 52," she said. "I never thought I'd retire at all."

But, she did, and her future changed. Some make the adjustment more easily than others, doing what they can and enjoying life. Some give up, she said, and stay home in a chair, a victim to their symptoms.

"There's nothing embarrassing about it," she said. "It's something to overcome."

For Stephenson, she found a new life at the crossroads. Advocacy.

She maintains a Web site for Parkinson Pipeline Project, where organizers keep interested patients abreast on the latest in Parkinson's research. They keep viewers updated on the latest clinical trials, the latest drugs going through the FDA channels. The site is www.pdpipeline.org.

She's involved with keeping in contact with legislatures. One cause she has taken up is the Neurotoxin Exposure Treatment Research Parkinson's Program. It's a federally funded research program that has taken a $6.5 million budgetary cut. She is writing letters, trying to give the program a $55 million boost.

It's a federally funded program under the U.S. Department of Defense, and is intended to benefit soldiers coming home with Parkinson's-like symptoms from head trauma or toxins exposure. Besides her own struggle with Parkinson's, Stephenson has another reason to support this program.

"I add at the end of my letter that if my son came back from Iraq (with a head trauma), I know I can depend on my legislators to be working in his best interest."

Her son is currently stationed in a remote base in Iraq.

The Web site, starting a support group, and keeping up with the latest research - it's like a full time job, and more, she said.

Clinical trials take up a lot of her time and effort, too. Stephenson encourages those suffering from Parkinson's disease to take part in these trials.

Stephenson was in a recent study where genes are injected in the brain, with the intent of rejuvenating the genes that produce dopamine.

Only 1 percent of patients take part in these studies, she said, and the more who take part could lead to a quicker cure.

But, for now, support groups like the one she is trying to form, where kindred spirits can get together, can help anyone with Parkinson's, or anyone who knows or helps someone with the disease.

"You can come to a table with people like you, and talk about things most of the world doesn't know exists," she said.

Anyone interested in forming a support group with Stephenson can contact her at 338-3467, or by e-mail at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it .

Contact Steve Marroni at This e-mail address is being protected from spam bots, you need JavaScript enabled to view it .

HOW TO HELP:

Carolyn Stephenson is forming a Parkinson's disease support group in the Gettysburg area. Anyone interested in joining should call her at 338-3467, or e-mail her, This e-mail address is being protected from spam bots, you need JavaScript enabled to view it .