By Michaela Gibson Morris/NEMS Daily Journal
Rhonda Rousseau wants people stirred to action, not shaken, by Parkinson’s disease.
The 40-year-old Northeast Mississippi woman knew she had to stand up for people with Parkinson’s disease when a well-meaning acquaintance asked how much longer she had to live.
“That was my wake-up call that I’m meant to do something,” said Rousseau, who was diagnosed in December at the age of 40.
Last week, Rousseau organized a Playing for Parkinson’s tennis mixer at the Tupelo Country Club to benefit a patient assistance fund set up through the HealthCare Foundation of North Mississippi, the philanthropic arm of North Mississippi Health Services.
“I play tennis. I thought it would be a fun day to show that people with Parkinson’s disease can still play,” said Rousseau, who recently moved to Oxford from Tupelo. “We’re on track to raise $8,000. All of this came together in about two months.”
Parkinson’s disease is most common in people over 50, but it does occur in younger folks like Rousseau and famously, actor Michael J. Fox.
At its root, Parkinson’s is a communication problem for the nerve cells in the brain. Nerve cells use a chemical called dopamine to send messages to the rest of the body. In people with Parkinson’s, the cells that make dopamine are being slowly destroyed. Why? No one knows at this point.
The hallmark shaking, difficulty walking, moving and loss of coordination come because it gets harder and harder for the brain to get its message through to the muscles.
The treatment focuses on controlling the symptoms by giving the body more dopamine or helping the dopamine the body has work better. At this point, there’s no cure and no way to stop the slow destruction of the dopamine-producing cells.
The disease can be expensive to fight. One of Rousseau’s medicines costs her more than $100 each month with the help of insurance, and she travels to see specialized neurologists in Birmingham. That inspired Rousseau to find ways to gather resources to assist Parkinson’s patients.
While Parkinson’s disease is disruptive and can deeply affect a person’s quality of life, it is not considered a fatal disease. It does increased the risk of disability, injuries from falls and pneumonia.
There’s no definitive blood test or physical marker for Parkinson’s, and it can be difficult to diagnose. Doctors use a battery of tests to look for cardinal symptoms of Parkinson’s, as well as other tests to rule out conditions. There are scans that can trace Parkinson’s progress.
“I had a perfect MRI,” without any sign of damage, tumors or lesions, Rousseau said. “To me that was frustrating, I wanted something to point at.”
Journey to advocacy
Rousseau’s journey started nearly two years ago in August 2010.
“I was putting on my eyeliner and I couldn’t steady my hand,” she remembers.
Initially, she was diagnosed with essential tremor, an involuntary movement disorder that affects the nerve cells in the muscles. It’s treated with different medications than Parkinson’s.
Rousseau kept up her busy schedule with work, her family and athletics. In spring 2011, she completed the 10K trifecta, running in the Oxford’s Double Decker, Corinth’s Coca-Cola Classic and Tupelo’s Gum Tree, but hurt her knee and took the summer off.
“When I quit exercising, the symptoms took off,” Rousseau said.
By August, she was having trouble writing her name and typing, and she went back to her doctor. They noticed her left arm wasn’t moving when she walked and her gait had changed. The left side of her face was drooping.
They referred her to specialists in Birmingham. On Dec. 16, she and husband Chris got the news – she was a 40-year-old with Parkinson’s.
“It took about a month to really absorb the news,” Rousseau said.
For her kids, Jacob, 11, and Helen 91⁄2, it was scary to keep hearing their mom had a “disease.” Their parents reassured them that Mommy wasn’t going anywhere.
“It’s nothing to be sorry about,” Rousseau said. “God didn’t give me Parkinson’s, but he’s going to use me through the Parkinson’s.”
Her Parkinson’s has demanded changes in her routine. Rousseau is left-handed and Parkinson’s affects her left side.
Buttons and shoe laces can be a challenge to work around. It can take her more time to get ready in the morning.
“SIRI is not Southern-friendly,” on her iPhone, she said with a laugh.
She’s started texting right hand only. Auto-correct can be maddening.
“I’ve told my friends, you never know what’s going to come through,” Rousseau said.
People expect the tremor, but there’s more to Parkinson’s. The fatigue can be overwhelming at times.
“My body is working so hard on so many gross motor skills,” that little things slip, she said.
Rousseau has managed personal victories.
She is currently receiving speech therapy at Regional Rehab to strengthen the muscles around her mouth.
“In December, I couldn’t smile, but today I can,” Rousseau said. “To smile in a picture with my family means the world.”