Walking with Parkinson's
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.
At the time, it was a huge risk. But by her side, as he had been all along, Sam told her to go through with the procedure despite some of the Mandelbaums' extended family who were very angry that the family would take the chance.
"It looked kind of ghastly, having to be awake for eight hours," Sam said. "The more we read about it we felt good … If they came up with a better treatment, they could remove it. You can turn it off as well."
In 2003, Erica had the surgery for her left side in Atlanta just months after the U.S. Food and Drug Administration approved the procedure. In 2006, she had another in Cleveland for her right side. She remembers the first one vividly.
The operating room was dark and dim except for the pulsating waves of light that filled the room as they pumped electricity through her brain. For hours doctors worked on her, and for hours she held the nurse's hand.
When it was all done, the doctor told her to hold up her trembling hand so he could turn the machine on and ensure the procedure was done correctly.
Immediately, her hand stopped shaking.
"The surgery was a success. It was like it gave our entire family new hope," Lia said.
Erica was given a new opportunity, and she was going to make sure she made the most of it.
Hello, Mr. Fox
In the next few years, Erica ran plenty of races, including the Gasparilla just three months after the second surgery. Ben, the captain of Massachusetts Maritime's cross country team, was there, too.
"My mom is the one that got me into running," Ben said. "I started running when I was 14 years old."
Erica began going to events to raise awareness about Parkinson's. She joined a committee at USF Health to raise money. She even attended an event where USF football coach Jim Leavitt spoke for nearly 20 minutes, she said. "He was great," she said.
She met famous people like boxer Muhammad Ali's family and former U.S. Attorney General Janet Reno. One person particularly stands out, though.
During a campaign stop by former presidential candidate John Kerry, she saw actor Michael J. Fox, who also has Parkinson's. She raced through the crowd to get to him and grabbed his arm.
"I told him I had Parkinson's too. He said to me, ‘Hey, you look pretty good,'" she said. "I said, ‘I had the surgery. I had DBS.'"
Things have slowed down for Erica in the past year. She visits the doctor quarterly, and she doesn't run as much. In March, she took early retirement from TECO, which left her with a tough decision: What to do now?
"Having Parkinson's is like having a kid. You think you have it figured out and then it presents a different challenge in a new way," she said.
Her choice was to return to school.
Erica was ready for her first class since graduating from the University of Florida in 1980. She parked her car at USF and walked to her supply chain management course.
She sat in the front row just like she does for every class, said her professor James Stock. She was very interested and everything went fine that night.
Well, until she left.
Erica still has symptoms of Parkinson's, including short-term memory loss.
She could not remember where she parked.
Erica called the police, and they picked her up and brought her to the car. The same thing occurred after each of her first three classes this semester.
"Sometimes I would walk out of class thinking, ‘What am I doing here? Why am I going through this,'" Erica said as her voice struggled with the grip Parkinson's has on her vocal chords.
Now, she goes to the same spot on campus so she can remember where she parked. She said she wouldn't dare stop going to class, which focuses on business shipping logistics, marketing and finance.
"This is another benchmark for me. You can't stop setting the bar high," she said.
As she nears the end of the semester, she said she wants to go into supply chain management when finished at USF.
But she said there's just one problem: "Who is going to hire a 53-year-old woman with Parkinson's?"
Based on what she's achieved in her life so far - someone will.
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