 |
 |
A New Outlook On Life Parkinson's is not just an older adults disease --many are diagnosed in their 30s and 40s Monday, May 17, 2004 By JENNIFER SAMMARTINO STATEN ISLAND ADVANCE When Bernard Brannigan was diagnosed with Parkinson's disease (PD) in 1998 at age 42, he had no idea what it was. Now he's an expert. Upon diagnosis, Mr. Brannigan was lost. "I had no idea what it was. I didn't know anything about it." Parkinson's disease is a progressive disorder of the central nervous system affecting between 500,000 and 1 million men and women in the United States. It's caused by the degeneration of the pigmented neurons in the Substantia Nigra of the brain, resulting in decreased dopamine availability. His symptoms included a tight and stiff right arm. His handwriting was affected. He started to walk with a slight limp. Later, he would learn that those were "tell tale signs" of the disease. THE LEARNING PROCESS Mr. Brannigan started doing research. "They show all of these pictures of old people. I felt out of place." While the mean onset for Parkinson's is age 60, about 10 percent of patients are diagnosed between ages 30 and 40. "It's very rare under the age of 30," said Dr. Allan Perel, medical director of the American Parkinson Disease Association Information and Referral Center. "It's a clinical diagnosis. Not everything is a picture, not everything is a blood test," said Dr. Perel. "A clinician see certain features. There can be exclusionary criteria," he said of the neurogenerative disease. One of Mr. Brannigan's first moves was to go to a support group meeting for younger patients. Staten Island University Hospital hosts the meetings at its Wellness Center at the mall, sponsored by the American Parkinson's Association, which was founded in 1961 on Staten Island to "ease the burden and find a cure" for Parkinson's disease. The organization focuses its energies on research, patient support, education and raising public awareness of the disease. A YOUNG PATIENT Mr. Brannigan is a classic case. "I had all the signs," he said. Mr. Brannigan's life has changed drastically since diagnosis. "Every day, you wake up, put your foot on the floor, and it's there." His mobility is rigid and he said that his left leg is especially stiff. "Sometimes you have to tell yourself what you have to do next," he noted, walking slowly across his West Brighton living room. "It's not a terminal illness," Dr. Perel said of Parkinson's. "There is more treatment than any other neurogenerative disease. "Sometimes, patients feel like it's a death sentence, but it's not. We're closer to dramatic improvement in treatment," he said. Mr. Brannigan, who works full time with the city Health and Hospital Corporation in Manhattan, used to commute via bus, the ferry and the subway; now it's usually the express bus -- especially in hot weather. Just going out can be hard. "People think Parkinson's and they think, tremors," he said. But that's not all. His balance is very much affected. SYMPTOMS, SIGNS Most patients complain of fatigue, weakness, tremor and slower movement, Dr. Perel said. Other signs are a resting tremor, smaller handwriting, a little dry skin on the forehead and postural instability. Many patients also lose expression in their faces. "I've had patients describe it to me -- they say there is nothing worse than being trapped in your own body," the neurologist said. Mr. Brannigan also suffers from dysconesia, which is characterized by flailing limbs, chewing motions and head movements, a result of his medication regimen. "He may seem excited or nervous, but it's just the effect of excessive medication," said his wife, JoEllen. "It's very difficult," Mr. Brannigan said. "You're on the phone talking, you have to explain it to people. It seems odd." Dr. Perel also addressed the "on" and "off" states of patients with Parkinson's, which is due to an influx of medication. A patient who is taking a lot of medication may move wildly. For many, it's better than the alternative, which is slower movement. Most patients are very healthy otherwise, he noted. TREATMENTS There are multiple treatments for Parkinson's disease. There's pharmacologic, which consists of the drug Levodopa, Sinemet and others; and non-pharmacologic approaches, which include a healthy diet, good sleep and family support. What medication mainly does is treat symptoms, Dr. Perel explained, since there is still a lot to be learned about the disease and why neuro cells continue to die. Since the PD diagnosis, things have been put into perspective for Mr. Brannigan. "I appreciate time with my family, you learn to appreciate having a healthy body." Mr. Brannigan has also joined the world of PD advocacy in a big way. "I probably spend too much time on it," he admitted. "It's given me an outlet." Mr. Brannigan spends hours at the computer talking to other Parkinson's patients and working on the Parkinson's Pipeline project. He has joined a network of people who are trying to find new treatments for the disease. "It's really unique," he said. As the head tracker, he tracks and analyzes pharmaceutical trials of various drugs. A NEW PASSION "It's become a passion," Mr. Brannigan confessed. "If I could do it for a living, I would." Volunteering his time to track trials and research companies has brought out a gift that he didn't know he had -- the ability to write. Mr. Brannigan writes reports to be presented to the group. "It's been such an educational experience." "I've never seen him this passionate about anything," said his wife. "That's the silver lining. That's why he has this. This is his mission now." Mr. Brannigan isn't the type to sit around and feel bad about himself. "You can do so much more," he said. The disease's progression is gradual, Mrs. Brannigan said. "It's something that you live with every day. You don't deal with it in an emergent way. It's gotten much worse, but it's not as bad as it could be." There is no cure for Parkinson's. But the symptoms can be treated. Mr. Brannigan's medications are stored in plastic container, about the size of a shoebox. "It slows your body down," he said. The medication regimen is rigorous, Mrs. Brannigan reported. "He gets up at 5 a.m. to take meds so he can get into the shower and to work." EVERYDAY LIFE "It's not like when you have a headache and take Tylenol and it goes away. He has to plan ahead in terms of taking medication." His children, Jeffrey, 14, and Emily, 11, support their dad and help out around the house. "These guys are great when I need help," he said. He can't mow the lawn, so Jeffrey does it. He can't carry things while walking, so Emily is there with a hand. "They have to learn to take more responsibility than other kids," Mrs. Brannigan said. Some days are harder than others, he admitted. "You have no will to do anything at all -- just sleep," he said. "You have to handle it with a certain amount of humor," Mrs. Brannigan said. "It's not something you can control." Brannigan does best when he is sitting down, his wife noted. And that's where his advocacy work comes in. "Part of the problem with PD is that you still think you can do things and you can't," Mr. Brannigan said. "I think there is a higher incidence," Dr. Perel said. "The cause is still mysterious." SOURCE: Staten Island Advance, NY http://www.silive.com/search/index.ssf?/base/living/1084801530146700.xml * * * ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn