Parkinson’s disease is insidious. It starts out slowly, according to Sebastian River Medical Center neurologist, Dr. Roberta Rose, but it is a chronic disease that gets progressively worse over time, continuing to develop over 15, 20 or even 25 years. The cause is not yet known and neither is a cure.
For Bruce McEvoy, the newly elected board president of the Indian River County Alzheimer’s and Parkinson’s Association, (APA), the operative word in the previous sentence is “yet.”
A former SealdSweet chief executive officer, McEvoy was diagnosed with Parkinson’s five years ago but he’s not even close to throwing in the towel. In fact, he says, the APA is fighting back harder than ever. “It’s hard to keep fighting,” say McEvoy, “but you just can’t give up,” and a slew of recently or soon-to-be launched programs here in Vero Beach lend credence to his group’s determination to fight a disease that afflicts nearly one million people in the United States. Every year another 60,000 new cases are diagnosed, and according to the Centers for Disease Control and Prevention, complications from Parkinson’s are the 14th leading cause of death in the United States.
One of McEvoy’s goals is to keep the fight against Parkinson local. According to McEvoy, “We’re not going after any federal money. We want to raise money here and we want to spend it here,” he says. He also wants to get a more accurate count of the number of Parkinson’s cases in Vero Beach because, he says, it is a woefully under-reported disease.
So what is Parkinson’s? According to the Mayo Clinic, the research says that when certain nerve cells or neurons in the brain break down or die, they are no longer able to produce the chemical messenger or neurotransmitter known as dopamine. When dopamine levels decrease, it causes abnormal brain activity. That, in turn, leads to the most common symptoms or side effects of Parkinson’s including tremors of the hand and arms, speaking in a softer voice than usual as well as movement, balance and mobility issues. Exactly what causes those neurons to break down or die, however, remains a mystery.
Oddly, it isn’t Parkinson’s disease itself that kills people. It’s Parkinson’s symptoms and side effects. Parkinson’s disease is what’s killing off those dopamine-producing neurotransmitters. The Parkinson’s symptoms are what kill people.
For example, according to the National Institutes of Health, the leading cause of death for people with Parkinson’s disease is pneumonia. Pneumonia can occur in Parkinson’s patients when the muscles in the throat and esophagus fail to operate properly and direct the food or liquid a patient consumes into the lungs rather than the stomach. The lungs and airways can then get infected and that leads to pneumonia. Parkinson’s patients are also at risk for asphyxiation or choking to death from food blocking their airways for the same reason. Fatal falls from balance problems and cerebral hemorrhages are also more common in people with Parkinson’s than the public at large.
Making matters worse, the National Parkinson’s Foundation reports that over 60 percent of those diagnosed with Parkinson’s also develop moderate to severe depression. Since Parkinson’s is most common in people over the age of 60, the sheer frustration of no longer being able to use a knife and fork or to perform other simple tasks only feeds that depression.
Here in Vero Beach, however, McEvoy and the APA have found one way to combat both depression and the voice issues common to Parkinson’s with their vocal group, the “Trembleclefs.”
“We don’t sound like a choir,” McEvoy laughs, “but it’s great fun and we are able to forget about our disease for an hour or so.” The vocal exercises the group does and the singing itself helps strengthen the muscles that control speech. Dr. Rose is even more enthusiastic about the Trembleclefs. “I think it’s tremendously helpful,” says Rose. “It’s really fabulous and it does help improve the clarity and volume of their speaking voices.”
Singing, meanwhile, is not the only way the APA deals with this disease. The group is now actively looking to partner with the University of Florida Center for Movement Disorders on a video or “skype” teleconferencing program so that Vero area residents can see, hear and speak to cutting edge professionals 200 miles away from the privacy and comfort of a special room at the APA’s Vero offices.
Additionally, four months ago, the APA launched a “Virtual Dementia” program that, with the aid of special gloves, goggles and flooring actually replicates many of the problems Parkinson’s and Alzheimer’s patients face each day. That program struck a chord with local law enforcement. Both the Vero Beach Police Department and the Indian River County Sheriff’s office now send officers there so they can experience and better understand what so many of the people they meet in the course of their duties go through each day.
One of the most innovative programs at APA is for the caretakers of those with Parkinson’s. “Sixty-five percent of Parkinson’s caretakers,” explains McEvoy, “die before the patient does.” So, to offer those caretakers much-needed breaks, the APA hosts Parkinson’s patients with activities at its offices and trips to local museums so caretakers can have some time off and still know their loved one is in good and qualified hands.
The APA is also looking into dance, yoga and art appreciation programs to help maintain and enrich the quality of life for those who have the disease.
Meanwhile, research into Parkinson’s continues. Dr. Rose points to the efforts of television’s Michael J. Fox saying “He has done more to raise awareness about Parkinson’s than anyone in the past 50 years.”
For now, medical treatments for Parkinson’s rely largely on prescription drugs and physical exercises.
Prescription drugs can play a vital role in restoring close-to-normal functionality for some Parkinson’s patients, though none of those drugs is totally without side effects.
Moreover, as the disease progresses, the dosage or even the drug itself may change, so it’s essential to work closely with a qualified medical professional. “A lot of people here,” explains McEvoy, “are still being treated by a general practitioner when they should be seeing a neurologist.”
A more exotic course of treatment might include what’s known as “deep brain stimulation” or DBS. This delicate procedure involves implanting electrodes into select targets inside the brain to alter its communication pathways. Deciding on that procedure requires even more extensive consultation with a neurologist or neurological surgeon about the pros and cons.
In the meantime, Vero Beach along with the rest of the country continues to raise money for research so that Parkinson’s can one day become nothing more than a bad memory.
McEvoy and the Trembleclefs will be happy to sing at its wake.
The Alzheimer and Parkinson Association Memory and Motion Center is located to 2300 Fifth Avenue Suite 150 in Vero Beach. To find out more, call 772 563 0505 or email [email protected].
