ARTICLE: Parkinson's Tremors Ripple Through Lives
Disease affects brain, torments body
By Elizabeth Lynch - Poughkeepsie Journal

Tuesday, May 25, 2004

Joe O'Neill used to entertain children at local hospitals as Mr. Pom Pom the clown. But when one of his hands started
shaking, he gave it up because he didn't want to scare the children.

That was in 1998 -- before he was diagnosed with Parkinson's disease.

''I gave up clowning because I can't tie the balloons because I shake and I don't want the kids to see me shake,'' said
O'Neill, a 74-year-old Hyde Park resident. ''They tell me that eventually I'll have it all through (my body).''

Parkinson's disease is a chronic neurological condition that affects a small area of the brain called the substantia
nigra. Symptoms include tremors in the hands and difficulty walking.

The deterioration of these cells reduces the brain's production of dopamine, a chemical that allows the brain to send
signals to the limbs. When dopamine levels drop to about 20 percent of normal, symptoms appear.

1.5 million diagnosed

The disease affects more than 1.5 million people in the United States. There is no blood test for Parkinson's; all
diagnoses are based on symptoms. Between 85 and 90 percent of those diagnosed are over age 60.

As many as 60,000 new cases are diagnosed annually, said Paul Maestrone, director of scientific and medical affairs for
the American Parkinson's Disease Association. There is no cure.

''Unfortunately, what is available now is just the treatment of the symptoms,'' Maestrone said.

Most treatments use medications to compensate for the lack of dopamine, either by increasing the remaining cells'
ability to produce dopamine, or by adding dopamine.

The disease is becoming more prevalent as neurologists become more adept at recognizing the symptoms,

Maestrone said. And more people seem to be diagnosed younger, said Jacquelyn Efram, who facilitates the Parkinson's
Disease Support Group of Poughkeepsie. Boxing legend Muhammad Ali was diagnosed when he was in his 40s and actor
Michael J. Fox was 30 when he was told he had young-onset Parkinson's disease.

''It's not an exclusive disease of the aging population,'' Efram said. ''The cost is tremendous when the person is 40
and can't work anymore and may have a family.''

Millions of dollars are being spent on research to define the cause, find a cure and relieve the symptoms.

One new treatment is called deep-brain stimulation, in which electrodes are implanted in the brain and an electrical
pulse is used to block the abnormal nerve signals that cause tremors and other symptoms, according to the National
Institute of Neurological Disorders and Stroke.

Some studies are focusing on how to replace the dopamine-producing cells in the brain. Others focus on developing new
medications that will slow the progression of the disease or produce higher levels of dopamine.

Thomas Rubeo of East Fishkill has had Parkinson's for 16 years. He's taken part in clinical trials and other studies
with the hope there may be some new medication that will interrupt his Parkinson's -- and perhaps someday prevent it in
others.

''It's to my advantage, to my children's advantage,'' Rubeo said. ''I'm expecting they'll find a cure.''

Although a hereditary link has not been proven, there are seven cases in Rubeo's family. His wife's mother had the
disease and they fear their four children will be diagnosed someday.

''Perhaps by then there will be some medication so they will not have to go through what their father went through,''
said Rubeo's wife of 50 years, Gloria.

Felt stiff and tired

Rubeo was diagnosed when he went to his general practioner because he felt stiff and tired and was losing some of his
dexterity. His doctor diagnosed him by the ''poker face'' that is typical of the Parkinson's patient.

His older brother was diagnosed six months earlier.

Rubeo was diagnosed at the age of 57, although he likely had the disease for some time before that.

''At first it was a trauma,'' Gloria Rubeo said. ''It becomes part of your routine.''

''Everything is affected,'' Thomas Rubeo said. ''My actions are affected.''

Rubeo's most obvious symptom is his stooped back. He has difficulty walking. His feet will freeze. He and his wife use
tricks to have his brain send the signal to move his foot along a different path. For example, they'll put something in
his path so that his brain says step up and over, not forward.

Because of his physical appearance, people talk down to him.

''It does not affect the brain's intelligence,'' Gloria Rubeo said.

Her husband, a draftsman by trade, still does some work. His mind is sharp, and he routinely seeks out new information
about Parkinson's. In fact, he is waiting for a new drug to be approved by the Food and Drug Administration that will
increase the amount of time his medication is effective.

Rubeo takes medication every three hours to increase his dopamine levels, allowing his brain to send its signals to his
limbs.

''When the medicine is effective, he functions quite well. When the medicine wears off, he can't move,'' Gloria Rubeo
said.

The medication generally gives him about 90 minutes to two hours of mobility, then the effectiveness wears off and his
ability to move declines.

Works around medication

Rubeo plans his day around his illness and his medication, scheduling outings for when he will be most mobile.

''We didn't stop our life because of it,'' Gloria Rubeo said.

He credits his ability to cope with the disease to his wife, who considers Parkinson's both their disease. Only her
husband has the symptoms, she said.

O'Neill hasn't stopped living, either. He still will put on his makeup and participate in events, but he doesn't go to
the local hospitals anymore to entertain children.

''You just learn to put up with it,'' O'Neill said.

His primary symptom is tremors in his right hand. He can't hold a cup of water without shaking and spilling most of it.
To write, he must either use his left hand or guide his right hand with his left.

''I forget (about the disease) sometimes,'' O'Neill said. ''But I don't forget for long.''

O'Neill used to work as a mechanic with the U.S. Postal Service. Now, he needs two hands to guide a screw driver into
the notch and turn it. Recently, he spoke about his disease in his Hyde park home. As he talked, O'Neill sat with his
hand in his lap.

O'Neill also takes medication to increase the production of dopamine.

''They say it will extend into my body,'' he said of the disease.

But he doesn't dwell on that.

He continues to enjoy his life, dressing in clown makeup for a barbershop quartet performance. And O'Neill considers
himself lucky. He remembers the children he used to entertain as Mr. Pom Pom the clown at local hospitals and says he's
not as bad off.

''The good Lord was good to me. He waited until I was finished,'' he said. ''It didn't deter me from earning a living.
I'm 74 and this is all I got.''

Elizabeth Lynch can be reached at [log in to unmask]

What is Parkinson's?

Parkinson's disease is a progressive neurological disorder caused by the degeneration of neurons in the part of the
brain that controls movement.

The loss of these neurons creates a shortage of dopamine, a chemical used by the brain to send signals to the limbs.

Parkinson's disease was first formally described in ''An Essay on the Shaking Palsy,'' published in 1817 by a London
physician named James Parkinson. It has probably existed for many thousands of years.

The first symptom of Parkinson's disease typically is the trembling or shaking of a limb, especially when the body is
at rest. The tremor often begins on one side of the body, frequently in one hand.

Other symptoms include slow movement, an inability to move, rigid limbs, a shuffling gait and a stooped posture.

Those with Parkinson's disease sometimes have reduced facial expressions and speak in a soft voice.

The disease also may cause depression, personality changes, dementia, sleep disturbances, speech impairments or sexual
difficulties. The severity of Parkinson's symptoms tends to worsen over time.

Parkinson's appears to be slightly more common in men than women. The average age of onset is about 60. Parkinson's
disease is something of an ''iceberg phenomenon,'' lurking undetected in as many as 20 people for each known
Parkinson's patient. Some researchers argue that almost everyone would develop Parkinson's eventually if they lived
long enough.

There are many theories about what causes Parkinson's disease, but none have been proved. Some studies with twins and
families with Parkinson's have suggested that some people have an inherited susceptibility to the disease that may be
influenced by environmental factors.

Severe Parkinson's-like symptoms have been described in people who took an illegal drug contaminated with the chemical
MPTP and in people who contracted a particularly severe form of influenza during an epidemic in the early 1900s.

Parkinson's disease is usually diagnosed by a neurologist who can evaluate symptoms and their severity. There is no
test that can clearly identify the disease.

There is no cure for Parkinson's disease. Many patients are only mildly affected and need no treatment for several
years after the initial diagnosis. When symptoms grow severe, doctors usually prescribe levodopa (L-dopa), which helps
replace the brain's dopamine.

Source: National Institute of Neurological Disorders and Stroke

Resources:

Call the Parkinson Disease Support Group of Poughkeepsie at 845-471-0075.

- Parkinson's Action Network: http://www.parkinsonsaction.org

- National Parkinson Foundation: http://www.parkinson.org

- American Parkinson Disease Foundation: http://www.apdaparkinson.org

- Michael J. Fox Foundation for Parkinson's Research: http://www.michaeljfox.org

- The National Library of Medicine and the National Institutes of Health Parkinson's resources:
http://www.nlm.nih.gov/medlineplus/parkinsonsdisease.html#nlmnihresources

- The Parkinson's Institute: http://www.parkinsonsinstitute.org/

Fund-raiser set

The Mid-Hudson Parkinson Walk for Research will be held 10 a.m., June 12 at Vassar College.

There is a $10 participation fee.

Money collected will be distributed to several research organizations.

For more information, call Jacquelyn Efram, facilitator of the Parkinson Disease Support Group of Poughkeepsie, at 845-
471-0075.

SOURCE: Poughkeepsie Journal, NY
http://www.poughkeepsiejournal.com/today/localnews/stories/lo052504s3.shtml

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