 |
 |
i found it, Barb 12/07 L.A. LIFE: Living with Parkinson's By Jenifer Hanrahan, Daily News Staff Writer Barbara Mallut stopped dead in her tracks as she made her way across the mall parking lot. "What's going on?" she asked herself. Her mind was commanding her legs to walk, but her feet stayed planted. Cars honked. Her heart raced. The terror welled inside her as she realized she could not budge. Her body had gone completely rigid. "Oh God, I can't move!" she shouted to herself as the tears cascaded down her cheeks. Mallut, 56, of Van Nuys is one of more than a million Americans diagnosed with Parkinson's disease, a degenerative neurological disorder that destroys the brain cells that control movement. It can lead to tremors, uncontrollable body movements and paralyzing muscle rigidity. Last week, actor Michael J. Fox, 37, disclosed he, too, suffers from the disorder and had been hiding the symptoms for seven years. Fox's candidness has heartened younger people battling Parkinson's. Although he's not the first celebrity to talk publicly about the disease -- Muhammad Ali, the Rev. Billy Graham and U.S. Attorney General Janet Reno all have Parkinson's -- Fox is the best hope for getting people to understand that anyone can be touched by it, including young adults, Parkinson's advocates say. Best-known for his role as Alex P. Keaton on "Family Ties," Fox has a youthful, energetic persona -- one not typically associated with a disease thought of as an affliction of the elderly. In fact, about 15 percent to 20 percent of those diagnosed are younger than 50, according to the National Parkinson Foundation. About 10 percent of all cases occur in people younger than 40. "We feel so invisible," said Mallut, who first noticed the symptoms at age 32 and was diagnosed with the disease at 39. "Everyone thinks it's an older person's disease, but it's not. We have families we are raising or have raised and none of us want to be dependent on the government for support." Fox's publicists say support for the star of ABC's hit sitcom "Spin City" has been overwhelming as hundreds of well-wishers call his office and write letters of support. National Parkinson Foundation representatives have approached Fox to serve as their spokesman, seeing his disclosure as an opportunity to improve public understanding and raise more research dollars to find better treatments and, eventually, a cure. "I thought, `Hallelujah!' " said Rod Preston, 48, of Moorpark, who was diagnosed 17 years ago. "I wouldn't wish this disease on anyone. But I've been waiting for someone young and famous to have it." There is no known cause or cure for Parkinson's disease, a condition that cripples the brain's ability to direct muscle activity. While there are many drugs and surgeries that can alleviate the symptoms, the disease cannot be reversed. Parkinson's is progressive and ultimately renders some people unable to walk, talk or care for themselves. Depression is common. Over time, people can develop what's known as a Parkinson's "mask" -- when the muscles of the face get so rigid they don't register facial expression. And in some, it can lead to dementia. In the beginning, however, the symptoms of Parkinson's disease are hardly noticeable. They creep up insidiously -- first, perhaps, with a recurrent twitch, a sluggish arm or an ever-so-slight shaking. Fox noticed his left pinkie twitching while on location filming the romantic comedy "Doc Hollywood" in 1991. Within six months, the tremor had spread to his left hand, and his shoulder had become achy and stiff, he told People magazine. Rumors had circulated on a Parkinson's Internet mailing list for years that Fox had the disorder, Mallut said. Watching "Spin City" after hearing the news, she noticed the tell-tale signs of a person disguising Parkinson's, such as Fox's habit of keeping his hands in his pockets. Like Fox, many people choose to cope with the disease privately, hiding the symptoms from employers and from the world. "You feel diminished by it," said Joanne Nelson, 53, of Chatsworth. Nelson noticed her disease much the same way as Fox -- a tremor in her pinkie in her early 30s. Then looking in the mirror one day while brushing her hair, she noticed her hair shaking. "I realized my head must be shaking, too," Nelson said. Because there is no test for Parkinson's disease, it took several years for Nelson to get a correct diagnosis. "Most neurologists are often very nervous about rendering that diagnosis in a 30-year-old," said Dr. Cheryl Waters, chief of the Movement Disorders division at the University of Southern California and director of USC's National Parkinson Foundation Clinic. The first drug to treat Parkinson's, levodopa, was on the market as far back as the 1960s. But the side effects of the drug were, for some people, as bad as the disease. Levodopa relieved rigidity, but some patients also experienced nausea, heart problems, dangerous drops in blood pressure and dyskinesia, or uncontrollable, wild movements. In the 1970s, the original medication was combined with a second drug, carbidopa, and called Sinemet; the combination drug remains a staple treatment. Patients take it as often as once an hour to restore the brain's production of dopamine, the chemical messenger that helps nerve cells communicate with each other -- and therefore the muscles. The trouble is, the drug loses its effectiveness over time and can act unpredictably. It's a constant balancing act to take the correct amount. A little too much, and side effects return. That's what happened to Preston after he took his hourly dose of medicine at a Christmas party for Parkinson's patients in the North Ranch Community Center in Westlake Village last week. His body jerked. He crossed and recrossed his legs and held one hand down with the other. After about an hour, the movement subsided -- but then it was time to take the medicine again. It was hard for Preston to believe anything could terrify him more than the combat he saw in Vietnam -- until he woke in the middle of the night unable to move, gasping for breath. "At least in Vietnam, I could keep my weapon clean. I could stay alert," he said. "With this, you feel you have no control. My only sense of control is my thoughts. "It's torment. It's like rigor mortis without the benefit of death." For people with pronounced symptoms, several types of surgeries can help. Fox, for example, underwent a thalamotomy, which can alleviate tremors by destroying the overactive area of the brain that causes them. A pallidotomy is a similar operation that can treat balance problems and rigidity. Doctors and patients say a promising third surgical option uses deep brain stimulation to dramatically reduce severe tremors. Nelson tried an experimental fetal tissue transplant to replace the cells in the brain that produce dopamine. She feels it has helped somewhat, but it wasn't a resounding success. Preston is holding off as long as he can before resorting to risky brain surgery. The longer he can wait, the more doctors will know about the disease and the greater the chances of success, he believes. Despite the emotional and physical difficulties of coping with the disease, advances in medicine and surgical treatments have given Parkinson's patients reason to feel more optimistic than ever. Last week at the Christmas party, some Parkinson's patients got up to dance. As they joked and chatted, you had to look closely to notice the twitches and tremors. "This would not have been possible 10 years ago," said Kimberly Seidman, West Coast director of the National Parkinson Foundation. "You would have seen jerking and flailing limbs. The embarrassment was so great they simply stayed home." For Mallut, it's the small things the disease has taken from her that have been the most difficult to cope with. She can no longer hold her hand steady to apply lipstick the way she used to. She can't cut a steak and chew it without feeling as if she's choking. She can't roll over in bed to get comfortable. She had to skip the Christmas party because her balance was off and she felt her body reacting strangely to the medicine that day. During the hours and days the symptoms stretch on, she can do little else besides watch TV. Even reading can be impossible because the disease affects the eyes. But when the symptoms subside, Mallut is ready to make the most of it. She goes for a walk around Lake Balboa. Outside in the sunshine, she feels hopeful. "I made a deal with myself that I didn't want to be pitiable," she said. "There are days when there aren't good reasons to live. So I make them. I watch the kids skating and talk to the old men fishing. And I feel better." The greater Los Angeles area has several support groups for people with Parkinson's disease and their families. Some groups are tailored for young onset patients. Most welcome all ages. For more information about the disease, support groups and centers specializing in Parkinson's treatment, call the West Coast office of the National Parkinson Foundation office in Encino at (800) 400-8448. Return to L.A. Daily News | AOL Keyword: Daily News. ron vetter