Development director of the Parkinson’s Foundation discusses Parkinson disease, its symptoms and diagnosis, hopes to raise $30,000 in Feb. 25 event
By Brenda Alesii
The end of this month could be the beginning of a new discovery in the world of Parkinson’s disease research. The “Parkinson’s Revolution” will take place across the country on Feb. 25 —a major fundraiser featuring a spinning event throughout the day.
In Western New York, people of all levels can spin at Revolution Studio, 1716 Main St., in Buffalo. The ride generates funds and awareness for Parkinson’s, a disease that is notoriously difficult to diagnose.
In Good Health recently spoke with Chris Jamele, a Buffalo State University graduate and Kenmore resident, who is development director of the Parkinson’s Foundation New York and New Jersey Chapter. He works out of the Western New York office is in Williamsville.
Q. Parkinson’s disease is a progressive disorder that affects the nervous system and the parts of the body controlled by the nerves. How prevalent is this disease?
A. In a study done over three years, 90,000 people per year in the United States are diagnosed with the disease, an average of one person every six minutes. The incidence here in Western New York is relatively high.
Q. What are the symptoms?
A. Masking: the individual’s muscles are not able to form facial expressions. Also, hesitation or a difference in stride when walking; tremors are very common; loss of smell and therefore the sense of taste is affected as well. Constipation is often an early symptom, too.
Q. Why is Parkinson’s so difficult to diagnose?
A. Many of the symptoms mimic other diseases. In addition, there isn’t any single blood test or brain scan available to definitively diagnose this disease. We look at a progression of symptoms and check if certain prescriptions are helping the patient. On average someone who receives a Parkinson’s diagnosis has had the disease for six to eight years before the diagnosis. This is how long it can take the symptoms to become problematic enough for the patient to seek attention. A diagnosis, once that attention is sought, can happen rather quickly.
Q. What are the objectives of the foundation?
A. Our goal is to improve the quality of life for people affected by Parkinson’s as well as their care partners, families, friends and loved ones. Our philosophy is based on three pillars: education where people can learn about symptoms and treatments; resources, which includes publications, blogs, webinars; and research that is focused on both finding a cure and improved treatments while gaining a better understanding of helping patients with life on a daily basis.
Q. How can people access those resources?
A. Our local office is at 2805 Wehrle Drive in Williamsville. Because of COVID, we are not open every day, but I recommend calling to set up an appointment. The number: is 716-301-0423. We welcome sharing our resources and answering any questions.
Q. When celebrities such as Michael J. Fox and former Congressman Jack Quinn are diagnosed with Parkinson’s, what sort of impact does that have on your foundation?
A. There have been many high-profile people with the disease, including Neil Diamond, Janet Reno, Linda Ronstadt, George H.W. Bush, Alan Alda. We’ve worked closely with Jack Quinn, who’s been a great partner and has helped us get the word out. What often happens, however, is that people don’t want to be defined by the illness. It’s not uncommon for the individual to become quiet, perhaps self-isolate. They face challenges like their voices getting quieter having a harder time getting dressed, getting in and out of a car, all of which may lead to anxiety and depression.
Q. How is your foundation funded?
A. Largely through contributions and fundraisers. We also seek grants. Our goal for the Feb. 25 Revolution fundraiser is $20,000, but we’d love to hit $30,000. Our biggest annual event is Moving Day, a walk to beat Parkinson’s. That will be on Sept. 23 (MovingDayBuffalo.org), though the site is not live yet this year. Last year’s walk raised more than $110,000.