By Steve Bigham

Margaret Clark has had a guest in her home the past 13 years. This guest walked into the lives of both her and her husband, David, and made himself at home… uninvited.

His name is Parkinson’s Disease and he has no intention of leaving. He also resides in the homes of millions of other Americans. Doctors say they might someday find a way to rid the world of this “uninvited guest,” but for now, he will go right on being a freeloader.

“He came from nowhere and we have no idea what the cause is,” Mrs Clark said from her Newtown home this spring. “In some people, it’s genetic, but that may not be the case for everyone.”

Parkinson’s Disease is named for the English physician who first described it in 1817, James Parkinson. It is the second most common degenerative disease of the nervous system – the most common is Alzheimer’s Disease. In Parkinson’s Disease, there is a loss of the nerve cells in the brain that contain a dark pigment. These pigmented cells normally produce a substance called dopamine, which acts as a chemical messenger between nerve cells. No one knows why these nerve cells are lost in Parkinson’s Disease. Very often it hits just at the retiring age – the time when many people are looking forward to reaping the benefits of a long career.

The Newtown woman was first diagnosed with having Parkinson’s Disease in 1987 and has been forced to become a warrior in her efforts to live a relatively normal life ever since. But is has not been an easy battle. Mrs Clark is heavily medicated and whatever havoc Parkinson’s Disease does not inflict, the medication may reach and do harm. Her career as a decorative painter has been on hold due to the affliction, which causes people’s bodies to tremble and shake, as well as a slowing of movement, muscle tightness, depression, and in some cases, dementia. The drug Sinemet or L-dopa, plus 18 other drugs taken with it, is designed to control the unpleasant effects of Parkinson’s Disease. However, they make it difficult for users to sleep and the effects only last for a few hours a day. When they wear off, patients are forced to deal with the unpleasant symptoms of this dreaded disease.

Nevertheless, through all her discomfort, Mrs Clark has pledged to make a difference. April is Parkinson’s Disease Awareness Month and also marks the one-year anniversary of the support group she started for patients and caregivers affected by the disease. The group meets every third Monday of every month at the senior citizens center in Southbury. Membership in the support group has risen to more than 40 members.

Mrs Clark believes she has been saddled with the disease long enough to help others, some of whom are still trying to get over their recent diagnosis. Mrs Clark remembers being devastated when she was first informed she had Parkinson’s Disease.

“I had a tremor. It was gradual. I thought it was a punched nerve. My doctor sent me to Danbury neurologist John Murphy. I think he’s the best in the state at what he does,” she said. “I’ve progressed slowly because I’ve listened and had faith in my doctor.”

For Mrs Clark, it was also her ability to accept her situation and to maintain self-esteem, something she tries so hard to instill at her support group meetings. You can live with Parkinson’s Disease, she said.

“I try to impress on people that they’ve got to use their bodies as well as their brains. What you don’t use, you lose,” she said. We don’t just want to curl up into a ball and become a couch cabbage or potato. We’ve all got to carry on.”

But she reminds those who do not have Parkinson’s Disease not to let the medication fool you.

“People think that if you look normal one moment, then you must be okay. It’s like living with two people, though,” she said. “Every day is different. That is the difficulty in this. I can be Cinderella one day and Quasemodo the next. That’s one of my favorite analogies for this.”

The first medication for Parkinson’s Disease came out in 1967, and today the drug Sinemet is still being prescribed for the simple fact that it works. These days, however, many other drugs have been added to help offset the side affects of this powerful drug.

Until recently, Parkinson’s Disease was not accepted as being a handicap and people once had difficulty getting disability. Unfortunately, more and more young people – like actor Michael J. Fox – are being diagnosed these days. Parkinson’s Disease is no longer just a disease of the elderly and to simply say someone has a case of the shakes is an inaccurate description of the disease.

Mrs Clark does not know how she acquired the disease. No one else in her family ever suffered from it. She often looks at her past and wonders if two traumatic events in her life may have brought in on. As a child, she walked in to her neighbor’s house to find a mother and her two children dead from self-inflicted gas asphyxiation. Also, at age five, Mrs Clark was in a very serious car accident.

“They say trauma could bring it on,” she said.

Mrs Clark was born in London at the start of World War II and spent her early years carrying a gas mask with her to school. As a child, she lived an existence constantly threatened by Nazi bombers. At the age of one, her father was taken prisoner in France and held in a Polish prison camp for five years.

Today, she enjoys a more peaceful life in the New England countryside. Her husband is still employed at Perkin Elmer and the couple has two sons and a five-year-old grandson.

“He’s therapy for me. We get on very well,” she said.

Do you have Parkinson’s Disease or know someone who has it? Call Margaret Clark at 426-5534.