WASHINGTON, D.C. — Middlesboro High School graduate David Chedester and nearly 200 other representatives lobbying for more money dedicated to Parkinson’s disease research invaded Capitol Hill on Wednesday to “share our voice and show our disease state.”
Parkinson’s disease affects anywhere from 500,000 to 1 million people in the United States, but Chedester says the money being spent to find a cure just isn’t enough.
“With the amount of people suffering from this disease, the federal government contributes not even close to what it will take to find a cure,” he said.
“For example, less than 1 million people in the U.S. have AIDS, yet the federal government has contributed $3 billion dollars towards clinical research. If you were diagnosed with HIV or AIDS 20 years ago, that was an automatic death sentence. Now, they’ve developed medicine to stop the disease from progressing. Cutting edge breakthroughs have made that disease something that is now manageable,” said Chedester.
“I don’t think there’s anything wrong with our Parkinson’s community wanting that same amount of money dedicated to finding a cure for people living with Parkinson’s,” said Chedester.
Chedester said his meetings with Virginia Senators Robert Warner and Tim Kane were short, but successful.
“Sen. Warner was very receiving of the message I was trying to deliver, as was Sen. Kane,” said Chedester.
The disease is starting to affect the lives of younger people. The average age of someone being diagnosed with Parkinson’s is around 60. Chedester, along with several other constituents, were diagnosed in their 20’s.
Chedester said Warner was shocked when hearing his diagnosis came at such a young age.
“He went from smiling to a completely blank face,” recalled Chedester. “It was if he had seen a ghost. I saw his eyes then focus on my hands, which were obviously tremoring. I immediately felt his sincerity, not only toward me but all the others that were shaking with me.”
Warner shared that someone in his family was recently diagnosed with juvenile diabetes — a disease that does not run in his family.
“This is not the time to start cutting money from the medical research industry, but the time we need to be smarter where we are investing it. The National Institute of Health is responsible for finding cures, and we cannot let sequestration take that away,” said Warner.
Right now, there are only two sets of therapies for the Parkinson’s community — drug therapy or DBS, better known as Deep Brain Stimulation Surgery. Drug therapy works well with managing the symptoms, and the surgery is a “last resort.”
This surgery actually requires the patient to be awake for the entire 12-15 hour surgery. The brain is cut open so the surgeon can find where the motor symptoms are triggered.
Once the nerve responsible for causing the tremors and uncontrollable body movement is found, it is cut in half. While it significantly improves the overall health of someone with Parkinson’s, it unfortunately can make the disease worse.
“I met several in Washington that recently had the surgery. While it was successful for a few years, all of those that had DBS were now in wheelchairs,” Chedester said. “Some could hardly even speak.”
“Parkinson’s isn’t the only disease we were encouraging the congressmen to invest in. Alzheimer’s, multiple sclerosis, muscular dystrophy, Lou Gehrig’s disease, they’re all central nervous system diseases. We believe that they are all linked. If we can someone find a cure for one of them, then that would be a major breakthrough for all of us suffering.”
Until then, Chedester said there’s only one thing we can all do, “just keep smiling.”