Like many artists, sometimes Margaret Clark cannot resist the urge to put down everything else and just paint. “I get out my paints and daub on it a bit,” she said.
For Ms Clark, though, “daubing on it” is not a style she purposely nurtured. Prior to a diagnosis of Parkinson’s disease, 24 years ago, she was a decorative painter, producing works filled with fine details. But while the effects of Parkinson’s have curtailed her fine motor skills, it has not curtailed her enjoyment of painting.
It is a “can do” attitude, said Ms Clark, that has buoyed her up and made her able to deal with the life-changing disorder.
“I think the first five years [after my diagnosis] were the most difficult,” she recalled. “I think I cried every day for the first two years. But I decided you had to take the world by its tail, and life has been better since I changed my attitude,” Ms Clark said.
Parkinson’s disease is a progressive disorder of the central nervous system affecting more than 1.5 million people in the United States, according to the American Parkinson’s Disease Association. Clinically, the disease is characterized by a decrease in spontaneous movements, gait difficulty, postural instability, rigidity, and tremor.
When cells that produce dopamine die off prematurely, it results in Parkinson’s disease, explained Ms Clark. Dopamine is the message carrier to muscles that affect movement.
The disorder, as Ms Clark prefers to call it, is very individualized. For some, the progression is quick and relentless, putting people in wheelchairs within five years of diagnosis. Others will have only some of the symptoms that come on gradually. The three main symptoms, she said, are tremor, rigidity in the muscles, and slow movement or “freezing,” in which the person temporarily cannot take a step. Fine motor skills are lost, and a person with the disorder may drool, due to lack of muscle control. People with Parkinson’s find that they tire very easily, said Ms Clark, which she later learned was due to the lack of dopamine. Medications are available that alleviate some of the symptoms, but there is no cure for Parkinson’s disease.
These are all things that Ms Clark has learned in the quarter century with which she has lived with Parkinson’s. Her world changed with a twitch in her foot that she noticed when standing still. Then one night she experienced her toes suddenly going stiff. The toes eventually relaxed, but thinking she probably had a pinched nerve, she decide to see her doctor.
“She asked if it hurt, which it didn’t, and then sent me to a neurologist,” said Ms Clark, who told her she had Parkinson’s disease. Prior to her diagnosis, she had never heard of the disorder. There was no history of it in her family, and she was fairly young at age 48.
Parkinson’s is most commonly a late-onset disease, affecting men and women over the age of 60, and only about 15 percent of the people diagnosed have a family history of Parkinson’s, according to literature from the US National Library of Medicine. There is no known cause, although a combination of environmental and genetic factors may contribute to Parkinson’s.
Her first neurologist did not give her much information about what Parkinson’s disease was or what she could expect. “He just put me on medication and told me to come back in six months,” she said.
The medication made her nauseous, though, and she sought out another doctor. “Dr John Murphy is a wonderful, wonderful man. He told me it was a chronic, progressive disease with treatment, but no cure,” Ms Clark said. He pointed out that she had other subtle symptoms, such as not swinging her arms while walking. Still, she said, it did not strike her immediately that anything was drastically wrong. She did not even share the diagnosis with her two sons until a daughter-in-law noticed she had lost a substantial amount of weight and commented on it.
Her doctor encouraged conversation at each visit, telling her that only she could say exactly how she felt, in order for him to best treat her. An excellent patient/doctor relationship is essential to well-being and treatment, Ms Clark said, and she feels fortunate have found Dr Michelle Lavallee, after Dr Murphy took the position as CEO of Danbury Hospital.
She is thankful, as well, that the disorder has progressed slowly in her instance, allowing her to gradually rearrange her life as symptoms dictate. “I have to take my medications every two hours, so that the dopamine does not wear off. I have to plan my life around that. I walk with a cane when I go any distance,” she said, as balance and “freezing” have become issues, both of which could contribute to falls.
She showers and washes her hair while she has the mobility and energy to do so each day.
Always craft minded, in addition to daubing with her paints, she knits. She continues to garden as she is able, and is a member of the Garden Club of Newtown.
She believes that exercise is vital to those diagnosed with Parkinson’s, in order to keep muscles as strong as possible. Meditation and tai chi have helped her combat the symptoms, she said.
But it is acknowledging that life will never be the “normal” once known and having a positive attitude that is most important, she said.
“I believe you have to think about what you can do, not what you cannot do. It is mind over matter. You can do things if you try,” Ms Clark said, but admitted that it is necessary to be realistic.
Always independent, the biggest upset for her was when she had to give up driving, five years ago. “I went off the road three times, and the third time I thought my angel isn’t going to stay with me if I keep driving,” said Ms Clark. Now she counts on her husband, David, to drive her places.
Family support is huge, said Ms Clark. “You’re very lucky if you have a good caretaker,” she said. Her own family has accommodated her greatly, and even initial fears that the disorder might mean she would never hold her own grandchildren dissipated when they were born — 18 and 12 years ago — and she was involved in their care. The encouragement that she could safely hold the infants was a boost to her self-confidence, said Ms Clark.
Twelve years ago, she started a Parkinson’s support group that meets each month in Southbury, realizing that she needed to talk to others with the disorder, and that caregivers also needed a safe environment in which to share. The group encourages learning as much as possible about Parkinson’s. “Once I had accepted the fact that I had it, I read about it. You have to read and learn about [Parkinson’s] in order to deal with it,” she stressed.
“Twenty-five people came to that first meeting, so I knew there was a need,” Ms Clark said. Over the years, the number of participants has fluctuated between five and 45, and, to her distress, many of those diagnosed are younger and younger.
Parkinson’s Awareness Month is April, and Ms Clark said that she would like more people to learn about and understand the disorder. “People are more aware of Parkinson’s, I think, than when I was first diagnosed, because of famous people like Michael J. Fox and Mohammed Ali. But more research must be done. Parkinson’s disease is on the increase and occurring in younger people. They won’t know why, until they find a cure,” she said.
Research, she said, is necessary, but not enough funding is available, nor are there enough researchers. “There are some new medications on the market, but those are slow to come. Not that much progress has occurred in finding a cure. I do hope for a cure,” she added, “but I don’t think it will be in my time.”
She does not, however, lose hope. “It’s the uninvited guest, I call it. You can’t beat it, so you have to join it. People do get depressed when they look at what they can’t do anymore. You’ve got to have faith in whatever you’re doing. Why waste all your time feeling sorry for yourself,” she asked, “when you can still get on with life? Life slips away so quickly.”
To support Parkinson’s disease research, visit www.apdaparkinson.org/research.
The Parkinson’s Disease Support Group, for people with Parkinson’s and their caregivers, meets every third Monday of the month, at the Southbury Town Hall, from 1 to 3 pm. For information, call Margaret Clark at 203-426-5534.