FLORIDA: She's Overcoming Parkinson's ... ``I'm in charge now.''

[Murray Charters <mcharters@xxxxxxxxxxxxxx>]

FLORIDA: She's Overcoming Parkinson's ... ``I'm in charge now.''
By BILL WARD wward@xxxxxxxxxxxxx
Published: Jan 16, 2004

TAMPA - Like many runners, Erica Mandelbaum has learned to live with the 
occasional aches and pains that come with
pounding the pavement. Any discomfort she feels usually can be overcome with 
her favorite run: an invigorating 6-mile
jaunt through the streets of her Davis Islands neighborhood on a Saturday 
morning.

But nearly eight years ago, at age 39, Mandelbaum no longer could ignore the 
slight tremor in her left hand.

Initially she believed it was the result of a fracture she had suffered. But 
after visits to a variety of doctors - one
of whom claimed the shaking was due to a psychological issue - Mandelbaum 
learned she was in the early stages of the
insidious disease that is Parkinson's. She and her husband, Sam, were in shock.

Although the primary symptom of Parkinson's disease is a loss of control over 
movement and balance, it is a
degenerative disease that tends to affect those older than 60.

And Mandelbaum admits she went through a long period of denial, refusing to 
accept that someone her age could have
Parkinson's. ``I knew the word `Parkinson's,' but I had always equated it with 
the elderly,'' said Mandelbaum, now 47.
``It's like any diagnosis. You don't really research it until you have to. It's 
just something you hear about. And then
I went home and learned more on the Internet, and then I said, `Oh my God.' ''

Mandelbaum discovered she has the less common ``young onset'' Parkinson's, 
which typically afflicts people between the
ages of 20 and 40. Still, she refused to stop running or working. She treated 
her Parkinson's with Levodopa and
maintained a relatively normal schedule. But the tremors became increasingly 
difficult to control with drug therapy.

Her 6-mile runs became 3 and, soon, 2 and 1 mile. Sometimes even walking was 
difficult. She recalls leaving her car en
route to work and literally freezing in her steps in the parking lot, shaking 
uncontrollably, unable to make her body
move toward her office door.

``People were asking me, `Are you OK?' and I was so embarrassed,'' said 
Mandelbaum, who works in corporate
communications for Tampa Electric. ``I managed to turn myself around, get back 
in the car to take more medicine, and I
remember saying, `C'mon, medicine, work, work!' ''

Last summer, she had a similar episode during a 5-kilometer road race at Al 
Lopez Park. A half-mile into the run, she
started shaking so badly she had to drop out and sit under a tree until she 
could regain control of her body. ``That
day was a painful dose of reality,'' she said. ``I knew it meant the end of my 
running.''

Mandelbaum's neurologist, Robert Hauser, had told her about a relatively new 
surgery in the United States that implants
a stimulator deep in the brain to control tremors. She had scoffed at the idea 
of brain surgery. After that race, she
listened. Eventually she decided to have the treatment.

The surgery involves implanting a thin, insulated wire with four small 
electrical contacts in targeted areas of the
brain. The wire is connected by an extension to a neurostimulator, which has a 
battery and electronics.

The neurostimulator usually is implanted just under the skin near the 
collarbone. With a handheld magnetic device, the
neurostimulator can be turned on to control tremors.

The surgery was done in two phases at Emory University Hospital in Atlanta, 
starting in September and finishing in mid-
October.

Before the surgery, Mandelbaum told doctors she had two goals: to be able to 
wear high heels again and to compete in
her favorite race, the Bank of America Gasparilla Distance Classic 15-kilometer 
(9.3 miles) run.

She promised her son, Ben, a cross country and track runner for Plant High, and 
her daughter, Lia, a student at
Hillsborough Community College, she would be on Gasparilla's starting line at 
7:30 a.m. Jan. 24.

``It didn't surprise me she made that her goal because she's never stopped 
fighting back,'' Sam Mandelbaum said. ``I
just have so much respect for her for the courage she has shown through all 
this.''

Mandelbaum has experienced significant relief from Parkinson's. She wears 
3-inch heelsand runs as much as six miles in
one outing. She continues to ``wage war against Parkinson's'' as co-chairwoman 
of the Florida Coalition to Cure
Parkinson's Disease.

And Mandelbaum plans to fulfill her promise to her family next weekend by 
running Gasparilla's 15k.

It's a race she has completed more than a six times, usually fighting for one 
of the top spots in her age group. But
those runs came before Parkinson's. Now the event holds much deeper 
significance. Completing it will be proof to
Mandelbaum she is in control of her life once again. ``I just want my kids to 
know that I have given enough time to
Parkinson's disease,'' she said. ``I'm in charge now.''

SOURCE: Tampa Bay Online / Tampa Tribune, FL


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