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'Young Parkies' deal with Parkinson's, normally considered an affliction of old age

At 36, Linda Hatfield had a job she loved and, as an avid cyclist, was in the best shape of her life. But she had an odd tremor in her right arm, and several doctors couldn't say why.

Trying to rule out what he considered a remote possibility, a neurologist prescribed a medication used to treat a movement disorder best known as an affliction of old age.

Fifteen minutes after she took her first pill, Hatfield's tremor stopped.

"I was like, 'oh, no, please,' " she recalls thinking, a dreadful realization dawning: " 'I've got Parkinson's.' "

There's no preparation for joining the ranks of "Young Parkies," as some call those diagnosed with the disease at the peak of career and family responsibilities. But awareness is growing that Parkinson's can emerge in your 30s, 40s or 50s — as it did for actor Michael J. Fox and as many as 300,000 Americans who have been diagnosed with early onset Parkinson's.

While the classic tremors, stiffness and slowness are devastating at any age, the symptoms become all the more challenging when juggled with full-time jobs and young children. Do you tell your boss, or hide your shaking by burying your hand in your pocket? How do you plan your life around a degenerative disease with no cure? Current therapies only relieve symptoms for a limited time; they do not slow the neurological deterioration.

In the decade since her diagnosis, Hatfield has worked her way through a range of Parkinson's treatments, from medications to brain surgery performed while she was awake. She has gotten relief from some symptoms, but as the disease progressed she still has had to give up her job, her car, her apartment on Tampa's Davis Islands — basically, life as she knew it.

"Everything had been going so well," she said, "and within a year it was like boom: What happened?"

• • •

Parkinson's patients don't have enough of a substance called dopamine — the chemical messenger that transmits the signals from the brain that coordinate movement.

Not all patients have the trademark tremors. Many find their muscles become extraordinarily stiff, tight and cramp uncontrollably. Movement slows down, whether walking, forming a fist or even blinking.

No one knows exactly what causes the disease, but both genetic and environmental factors are thought to be at play. People with an immediate family member with Parkinson's are about three times more likely to develop it than those with no family history.

On the plus side, in the young the disease tends to progress more slowly and smoothly than at older ages, experts say. And younger patients often don't experience as many memory and balance problems.

But younger people are more prone to complications from the leading drug used to treat the disease, said Dr. Robert Hauser, director of the Parkinson's Disease and Movement Disorders Center at the University of South Florida.

These include the involuntary twisting and turning movements that can be more ruinous to quality of life than the disease itself. And in the young, he noted, the gold standard Parkinson's medication, levodopa, loses its therapeutic value more quickly.

Typically, Hauser tells patients to expect five to 10 years benefit from drugs. At age 70, he noted, that isn't so bad.

"But if you're 30 that leaves a lot of years we have to deal with," he said.

• • •

Betsy Barber was 52 when she was diagnosed with Parkinson's. At first, the Tampa nurse was relieved to have an explanation for the weakness that had developed in her right leg and arm, which doctors initially feared was a brain tumor.

She openly shared her diagnosis so she'd have the support of coworkers and her four children, the youngest then a teenager.

Twelve years later, she's still working as a nurse, but no longer at patients' bedsides. She manages cases in the emergency department at Tampa General Hospital. So far, she is doing well on several different Parkinson's drugs, including some newer medications that she has received by participating in a half dozen clinical trials.

"It doesn't have to be a doom diagnosis," she said. "A lot of people are embarrassed about the tremors, and embarrassed if you have to ask someone to cut your meat, or to open a jar. I think you have to get over it."

For Rick Stoop of Largo, diagnosed seven years ago at age 47, each stage brings fresh challenges — for him as well as for his wife and 18-year-old twins. He leans on his family to pick up simple tasks such as yard work and driving when he can no longer manage.

"It's one thing to have mobility issues when you're 75 or 80, but it's another thing to deal with that when you're 50," he said. "You're not willing to give up that independence."

• • •

At 36, the only thing Linda Hatfield, who goes by the initials LA, knew about Parkinson's disease was that it was what Michael J. Fox had. Ten years later, it's her world.

Within two years of her diagnosis, she had to leave her job as an environmental chemist.

A year later, she had to stop driving. For a while, friends still came to pick her up for dinner. But their visits eventually dropped off.

Before long, Hatfield had to use a wheelchair. Between trips to the doctor — she also has a chronic pain condition worsened by Parkinson's — she could do little more than sit in her darkened apartment and watch television.

"I had really gotten to the point where I was like, 'what's the point?' " said Hatfield.

As her condition deteriorated, she qualified for deep brain stimulation, a procedure that doesn't stop the progression of the disease, but can significantly relieve motor symptoms in some Parkinson's patients.

She recalls almost all her brain surgery at Morton Plant Hospital in Clearwater, because she was awake for it. She received some local anesthesia, but still felt severe pain as holes were drilled into her skull.

The next step was more surreal than painful: A surgeon inserted electrodes in the region of her brain involved in movement.

"You're foggy, but awake enough to be responsive when they ask you to move your legs and arms," she recalled. "At one point, you're not able to move and the next point — wow."

Hatfield's legs, immobile for months, were pumping energetically on the operating room table in response to instructions to peddle a bike.

After a second brain surgery in 2008, Hatfield reached a turning point. With the support of her psychologist, she looked past all she had lost and found a new passion. She auditioned for the Master Chorale of Tampa Bay, whose performances have become a mainstay of her life.

A year and a half ago, she moved back home with her mother. She needed someone with whom to split her bills and to be around in case she falls.

Just shy of her 46th birthday, Hatfield walks with painstaking care. Her walking cane is wrapped in neon yellow bicycle tape — in honor of her hero, cancer survivor Lance Armstrong.

When she touches her shaved head, she can feel the wires delivering electric jolts to her brain. After the last surgery, she kept her head shaved — by choice. The stubble reminds her that she has gotten through worse days.

Since January, she has been in the hospital three times with complications from Parkinson's disease.

"Now it's just waiting and hoping and crossing our fingers," she said, "until they find a cure."

Letitia Stein can be reached at [email protected] or (813) 226-3322.

Parkinson's disease

What is Parkinson's disease?

A brain disorder that leads to difficulty with movement and coordination. It typically presents around age 60. It is known as early onset Parkinson's when it is diagnosed at younger ages.

What are the symptoms?

Tremors, slow movement, balance problems and muscle stiffness are the classic symptoms. But sleep problems, loss of smell, constipation and depression also are common.

How is it treated?

There is no cure. The standard drug to control symptoms is levodopa, but many find its therapeutic benefits lessen over time. Some patients also are helped by deep brain stimulation, in which electrodes are placed in targeted areas of the brain that control movement.

What's on the horizon?

New drugs are being studied in clinical trials to see if they can help relieve symptoms. Gene treatments that might slow down, or even reverse, the disease also are under review. A spinal cord stimulation technique that got a lot of hype a few years back no longer looks so promising.

Is Parkinson's fatal?

No, but complications can be. These include injuries after falls, since the disease impairs balance, or blood clots associated with immobility. And problems with swallowing can lead to serious complications.

Resources

• American Parkinson Disease Association National Young Onset Center: youngparkinsons.org or 1-877-223-3801.

• National Parkinson Foundation: parkinson.org or 1-800-4PD-INFO (473-4636).

• Michael J. Fox Foundation for Parkinson's Research: www.michaeljfox.org or
1-800-708-7644.

'Young Parkies' deal with Parkinson's, normally considered an affliction of old age 05/06/11 [Last modified: Monday, May 9, 2011 2:49pm]
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