Publication Date: Friday, April 12, 2002
Working for a Cure
Working for a Cure
(April 12, 2002)
By Diana Reynolds Roome
"I like to work," says Martha Hansen. "I go crazy if I can't go out and dig a hole." The trouble is, Hansen can no longer dig, though her Mountain View garden is blooming with spring color.
Quite apart from wielding a spade, it's all she can do to hold a pen these days. If Hansen wants to write a note, she has to get up early to accomplish a feat that requires her best energy. She has always enjoyed writing cards and letters, and her hands have carried out a million tasks with precision.
Now 84, Hansen worked as a home economics teacher on the Peninsula for 39 years, and after retirement worked another 17 years at the family's Mountain View firm. But her tireless activity, which showed no sign of letting up even after her eightieth birthday, has been brought to a virtual halt by Parkinson's Disease (PD).
"It was a terrible shock when I heard the diagnosis," says Hansen, who at first thought she'd had a stroke when her left hand suddenly refused to function properly. "I thought I'd die like my mother did _ at 94, of old age."
Few people imagine they'll develop Parkinson's, which if it does not cause death, can cut them off from life. A chronic and progressive disease with no cure as yet, it affects one in a hundred persons over 65. An increasing number of younger people are being diagnosed , Michael J. Fox being the most celebrated.
It causes rigidity and tremors _ especially in the hands and arms _ and slows movement down to a point where people can sometimes freeze in mid-action, lose balance and fall. Simple tasks, such as taking a shower and getting dressed, can take hours.
Parkinson's is a neurological condition that occurs when the brain stops making dopamine, a chemical essential for transmitting messages that allow muscles to move smoothly. One and a half million people in this country are known to suffer from PD, but as there is no clear-cut test, diagnosis is often by a process of observation and elimination.
"Early symptoms are subtle and occur gradually," says Janet DeMaria, outreach specialist at the Parkinson's Institute in Sunnyvale. "Often patients may be tired or notice a general malaise. Some may feel a little shaky or have difficulty getting out of a chair. They may notice they speak too softly or that their handwriting looks cramped and spidery. This early period may last a long time before the more obvious symptoms appear."
The non-profit Parkinson's Institute offers a full range of specialized services including a clinic, classes, and seminars as well as support and education for caregivers, whose own health is often depleted by the demands of their role. For anyone needing to learn more after diagnosis or wondering about their symptoms, the institute offers the opportunity to ask questions primary care doctors might not have time to answer, with physicians and staff who are knowledgeable and understanding.
Dealing with the disease
Trembling in the limbs can turn out to be essential tremor disorder or another movement disorder, not PD. The main difference between the two is that essential tremor usually happens when the limb is being used, whereas Parkinson's disease causes shaking even when the limb is at rest.
"It's so important for anyone suspecting PD to visit a neurologist who specializes in the disorder, and who knows the latest medicines and remedies," says Diana Preice, co-chair of the Peninsular Parkinson's Support Groups (PPSG).
Her own PD was diagnosed when she was only 46, though it is progressing very slowly. Now she devotes much of her time to Parkinson's causes, including putting out the PPSG newsletter and running the Los Altos support group, which meets once a month, as do branches in Sunnyvale and Palo Alto.
They usually offer a speaker on topics ranging from exercise, the latest drugs or special phone services, as well as the chance to exchange news and ideas. Discussions may cover ways to avoid dropping things, how to negotiate a busy airport, and dealing with depression.
"If you have a progressive disease and there's no cure, you're bound to feel depressed," says Preice, who finds volunteering for the cause uplifting. "Helping others makes you feel you're doing something positive to combat the disease."
Hansen admits she gets terribly depressed at times, but people keep her spirits up. She's grateful that the disease causes her no pain, though it can be embarrassing at times. She finds exercise makes an enormous difference to her spirits as well as her physical condition.
Marge Shively, the PPSG co-chair, has taught adapted physical education at De Anza and Foothill Colleges since 1984, and has seen Parkinson's students move in ways they never thought they could. "People get glued to the floor, but if you throw them a ball, they can move and catch it. You see someone sitting there like a stone and all of a sudden they're whacking the ball."
Working with equipment, such as volleyballs and paddles, sometimes enables patients to bypass the neurological quirk that causes freezing, says Shively. In the same way, people with Parkinson's can occasionally dance or move to music even though they cannot walk. Deep breathing, voice exercises, even yelling in class all help to loosen up stiff muscles and vocal cords. Laughter is a great way to loosen up, too.
The causes of Parkinson's are still not clearly understood. "Right now, there's a lot of promising research, but they need to find a cause before they can find a cure," says Heather Chester, assistant director of development at the Parkinson's Institute. Though the institute is an important research center, more and larger studies are needed to nail down the ultimate causes, which may include environmental toxins that cause nerve degeneration, and insufficient dietary folate.
Parkinson's is not hereditary, though occasionally more than one member of a family gets it. This susceptibility may be linked to a certain shared chromosome, or exposure to certain chemicals.
Although a cure has been on the horizon for years, none has materialized yet. This is partially due to a woeful lack of federal funding. According to the most recently available figures, while cancer research gets $3,193 per person per year in research dollars, and HIV/AIDS gets $2,011, Parkinson's gets only $98.
Stem cell research, which offers most promise to PD patients, has been slowed by the current administration. Though not a cure, one new treatment has successfully halted or even reversed PD's symptoms.
In 1987, Mountain View microbiologist Lawrence Naritoni had to retire from work because tremors made it too dangerous for him to handle live pathogens. His PD reached a point where he couldn't get out of bed or dress himself, though he was on the maximum allowable doses of L-dopa. Three years ago he became eligible for Deep Brain Stimulation (DBS), an electrode implanted deep into the brain to mimic the effect of dopamine - an open brain operation done while the patient is awake.
As such procedures are costly and could be risky, Naritoni enlisted the help of his Sunnyvale Support Group and the Parkinson's Institute to research the pros and cons. "I read everything I could read about it, to a point where I could almost do the darn thing myself," he quips.
The effort paid off. He now reckons he is at 95% of his capacity before Parkinson's was diagnosed in 1979. He can ride a bike, and just got back the driver's license he gave up when the disease became too severe.
"I think a number of new treatments and therapies will be approved over the next few years," says Daniel Togasaki, MD, PhD, a movement disorder specialist and staff scientist at the Institute. "There's a lot to be optimistic about."
For more information, www.parkinsonsinstitute.org Tel: 408-734-2800 or 1800-786-2958 X644.
Sunnyvale PPSG support group: 408-978-2859
Los Altos PPSG support group: 408-739-5207