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Locals with Parkinson's Disease Hold Fundraiser for Support, Awareness
- Oct 24 2008
Note from PDF: Please note that Israel Robledo, discussed in the article below is a recent graduate of PDF's Clinical Research Learning Institute.
By Kathleen Thurber
There are days Israel Robledo wakes up and feels completely normal.
He’ll try to stay very still for a few moments, worried that movement will incite the shaking that defines his Parkinson’s disease on the outside. But inevitably, he said, it always returns.
“You’re so used to not being able to do it that when you can you’re like a little kid with excitement,” he said.
He and a small group of other Midlanders suffering from Parkinson’s are working to form a non-profit that will work to increase awareness of the condition and raise funds to support others in the area who aren’t able to afford the medical costs and doctor’s fees associated with properly treating the disorder.
They’re holding a fundraising dinner on Nov. 8 meant to educate locals about the condition and kick start the movement for support, they said.
“It’s more widespread than we’ll ever know,” Robledo said, listing off the numerous individuals he’s come across who say they know someone with his condition.
Dr. Joohi Jimenez-Shahed, an assistant professor of neurology at Baylor College of Medicine, will speak about how many are affected and what the treatment options are during the dinner.
Parkinson’s disease, though widely recognized because of awareness efforts by sufferer Michael J. Fox, is a condition most know little about, Jimenez-Shahed said.
It’s defined as a group of movement disorders that are both chronic and aggressive and often cause tremors, stiffness, bradykinesia, slowness and/or a loss of coordination, according to the Parkinson’s Disease Foundation.
While Americans have become accustomed to looking for signs of cardiac issues, Jimenez-Shahed said, few are aware that a pain in the arm or the start of shaking could be signs of early-onset Parkinson’s disease.
That was the case for Bernie Gallagher, who noticed symptoms at age 39 and wasn’t diagnosed until he was 43. Even after he knew something significant was wrong, he said, it took specialist years to pinpoint the problem, first suspecting he’d had a stroke.
Robledo, who was sent to a specialist early on, said it took just a few months for his diagnosis. The delay in his case, he said, was admitting to himself the shaking was indicative of a bigger issue.
The common underlying cause scientists have found is a loss of brain cells that produce dopamine, Jimenez-Shahed said, which is something that can’t be stopped. However, she said, medicines can replace the dopamine receptors and effectively treat the symptoms of Parkinson’s disease much of the time.
“People don’t die from Parkinson’s anymore,” she said.
For the first few years, she said, most on medicine can go throughout their days without being reminded of their condition.
Jane Scheele, a local with Parkinson’s, said after she started taking medication she felt nearly back to normal. Now, though, she said, symptoms are starting to creep back in and she’s had to increase the dosage of her treatment in order to continue masking the symptoms.
“The irritating thing is if I’m upset I just shake. Not just my hand, but all over,” she said. “You’d like to be able to control it but you can’t.”
Scheele’s father had Parkinson’s and she said she was just diagnosed this year because she had been reluctant to admit succumbing to the disease she saw her father suffer through.
Hereditary Parkinson’s accounts for just a small percentage of all cases, Jimenez-Shahed said. In most instances, she said, doctors find there is some predisposition in the brain system that leads to the disease. How to take the information they have and work to treat the problem, though, she said, is an ongoing process.
“There may not ever be one specific treatment that applies to everybody,” she said.
Part of the solution, Robledo said, is participating in clinical trials. He’s signed up to do one this winter, he said, but often comes across others with the condition who don’t realize they can be part of proactively finding treatments.
Looking out his front door at his 3-year-old grandson, Robledo smiles and says he’s open about his condition with everyone, including his grandson and his Crockett Elementary students.
“It doesn’t bother me that anyone knows because it raises awareness,” he said, rising to join the toddler outside and proving with each movement that the condition doesn’t mean life has to stop with a diagnosis.
Kathleen Thurber can be reached at firstname.lastname@example.org.
Source Date: Nov 06 2008