Walking with Parkinson's
Published: Wednesday, December 2, 2009
Updated: Wednesday, December 2, 2009 14:12
At 53 years old, Erica Mandelbaum finally found out what she wants to do when she grows up.
It may have taken a long time to discover, but while attending USF this semester as a graduate student, something clicked.
Mandelbaum is taking supply chain management, and a recent in-class activity intrigued her.
On Nov. 19, she sat with classmates in a room inside the College of Business listening to professionals discuss the role of supply chain management in a struggling economy.
Mandelbaum, a retired coordinator of internal communications at Tampa Electric (TECO), said she was fascinated.
"That's what I want to do now," she said. "It's like you experience something like that and you want to go do it right away. I want to be a supply side manager when I grow up."
Going out and getting a job may sound simple, but it's not.
Mandelbaum's story is far from easy. Everything draws back to the moment nearly 13 years ago that she'll never forget, the moment she noticed constant quivers in her left hand.
There is something wrong
The small, simple tremors started in 1996.
Soon they became uncontrollable.
Mandelbaum went to different doctors to identify what was wrong, and she got a number of answers. One even told her the tremors were just "all in my head," she said. He suggested that she see a psychologist.
She took medication — tranquilizers even — but it didn't work.
"At this point, I didn't know what was wrong with me, and I didn't know who to trust. You just don't know who to trust," Mandelbaum said.
With her husband Sam, who is an attorney in Tampa, Erica, a longtime runner, began traveling around the country — as far as Kansas City and Los Angeles — in search of an answer. All the while, she fought her anger and depression about what was going on inside her body.
"Our family didn't know what to believe," said Lia Mandelbaum, Erica's daughter. "Here's this woman who was very active. She used to run in all the local races. The trembles were coming, though, and her body was changing so much."
The family found an answer at UCLA in 1997. A specialist gave her medication, and the results detected as early left-sided Parkinson's disease.
The anger and uncertainty continued for the next four years.
"It was pretty devastating," Lia said. "To be honest, I detached myself and I started going downhill."
Erica turned to running her races, including the Gasparilla 15-kilometer every year, kept working at TECO and took countless medications. Inside, however, things were not OK.
"First you grieve: ‘Why didn't I appreciate myself when I was healthy?' Then you get very angry," she said.
Erica remembers getting into her car some mornings and driving to work, her hands uncontrollably shaking as they gripped the steering wheel. She would park her car and walk toward the building.
Then her body would freeze up in an instant. The fear and confusion gripped her.
"I would call my boss and say, ‘Please, just give me a few minutes. I'll be in,'" she said.
Erica would go to Publix sometimes to get groceries and get self-conscious about her trembling hands. There were also terrible headaches and "incredible vertigo."
She found an outlet on the sidewalks of Davis Islands, taking long runs or going for a bike ride through the neighborhood where she lives with her family today.
There was a disconnect in the family, Lia said. "Our family was struggling with my mom," she said.
One night, Erica was so frustrated that she got on her bike and rode as fast as she could down the street, the thought of the disease that was gripping her body racing through her brain.
She pedaled faster and faster, slamming deliberately into a curb that jolted her off the bike. "My face was full of dirt. It was horrible."
The next day she decided she was done. She was through with it — the depression, that is.
"I said, ‘Hey, this is me now. Let's get out there and kick some butt for your husband, for your kids,'" said Erica, who also has a son, Ben, a senior at Massachusetts Maritime Academy.
Soon after, the family learned of a surgery that could help. The year was 2003.
‘It gave us hope'
There was a solution to her symptoms, but Erica was terrified of it.
A new and rare surgery that had been practiced in France was seeping into the U.S. during the early ‘00s. It was designed to help treat symptoms of Parkinson's disease, though it was not a cure.
The surgery is called Deep Brain Stimulation (DBS). It implants a fishing line-sized wire into the patient's brain. The wire latches to portions of the brain and connects to batteries implanted in the chest. The waves sent through it are thought to cancel out some of the symptoms of Parkinson's, such as tremors and stiffness.
"How it works is really not clear," said Dr. Donald Smith, an associate professor in the department of neurosurgery at the USF College of Medicine, who was one of the first to perform DBS in the U.S. "People really don't know the answer … Parkinson's is really a mystery … The thought is that (the surgery) sort of overdrives the neuro-network and temporarily diminishes its activities."
The patient has to be awake for the entire seven- to eight-hour procedure, too, though he or she does not feel pain.
"I was thinking, ‘Oh, great, where do I sign up?'" Erica said jokingly.