By Chris Meng
President, Parkinsonâ€™s Support Center Board of Directors
Senior Investment Manager, Community Trust & Investment Company
For patients from Louisville to Southern Indiana to Lexington to Cincinnati, Parkinsonâ€™s has proven itself not to be a one-size-fits-all disease. April is Parkinsonâ€™s Awareness Month and a good time to learn more about the disease that is impacting so many of our friends and relatives. As we have learned through programs sponsored by the Parkinsonâ€™s Support Center in Louisville, and documented in case studies below, exercise and education can be as helpful to patients as their medications are.
Take the case of Bill Reed, a Louisville businessman whose furniture manufacturing business in China requires untold hours of flight time between Louisville, China, Canada, Mexico and other spots around the globe. That would be a grueling schedule for anyone, but especially for Reed, who was diagnosed with Parkinsonâ€™s in November 2011.
When heâ€™s not flying, Bill runs marathons for fun. In fact, it was his training for the Boston Marathon a few years ago that led to his discovery of Parkinsonâ€™s. Bill had injured his back just three weeks from race time, resulting in back surgery and a scrubbed run. After the surgery, Bill noticed slight tremors developing in his left hand. His surgeon wasnâ€™t sure about what was going on, but he felt sure it was not related to the back surgery. The doctor referred Bill to a neurologist where he received his Parkinsonâ€™s diagnoses.
Not someone inclined to slow a busy schedule because of a Parkinsonâ€™s diagnosis, Bill and his wife, Dawn, discovered the Parkinsonâ€™s Support Center and everything it offers for patients and their caregivers, from on-site PD 101 awareness programs to a review course on how best to manage medications, and Fight Back with Fitness, a high-intensity exercise class. Bill is also active in a menâ€™s support group called Movers and Shakers (just to show that Parkinsonâ€™s patients do retain their senses of humor).
â€œFrom the time I first attended the PD 101 class, I have felt welcome and very comfortable at the Center,â€ Bill says.
The PD 101 class is taught at the Parkinsonâ€™s Support Center by Janet Greene, another Parkinsonâ€™s patient who, when not teaching others, can be found taking care of herself in yoga or spinning classes. The Lexington business leader splits time between working at the Movement Disorders Clinic at the University of Kentucky Medical Center and the Parkinsonâ€™s Support Center in Louisville. Like Bill and so many others, Janet was diagnosed with Parkinsonâ€™s after noticing a tremor in her right hand. That was the only outwardly visible sign of the diagnoses to follow.
My case is similar. Back in 2002, I was walking into a Cincinnati Reds baseball game when a friend mentioned that I was walking stiffly. I really had not noticed it before, but I started thinking what could be the cause, so I made a doctorâ€™s appointment. Fortunately we know more â€“ and continue to learn more â€“ today than we did 12 years ago. It took a lot of tests and time to come up with my diagnosis: a form of genetic Parkinsonâ€™s. My body has responded well to the medicine I have been taking since that diagnosis. There have been other, non-Parkinsonâ€™s related upheavals and relocations since the diagnosis, but my health has remained quiet stable. And that has led me to the notion that I have value to give back to my community.
Everything I have experienced has given me an increased sense of urgency about my life. I taught finance at Loyola University in Baltimore for a few years while I saw a neurologist at Johns Hopkins there. I had always been a trivia buff, so I organized a Trivia Bowl game to raise money for the researchers at Johns Hopkins. After moving to Lexington to work at Community Trust & Investment Company and discovering the Parkinsonâ€™s Support Center in Louisville, I continued to host the fundraiser as I became more involved in the Centerâ€™s work.
I have gained much from the center and it has helped not only me, but my family as well. The youngest of my three daughters has seen how Parkinsonâ€™s has impacted me and sheâ€™s seen my positive attitude about it. Now, she has enrolled at Ohio State University with the goal of becoming a neurologist.
While symptoms vary widely, the primary motor signs of Parkinsonâ€™s include tremors, impaired or slowed movements, rigidity or stiffness of the limbs and trunk, and impaired balance and coordination. A decreased sense of smell, drooling, increasingly small handwriting and diminished speech volume are also common symptoms.
The disease impacts thousands of people each year and is the second most common neurological disorder behind only Alzheimerâ€™s disease. Parkinsonâ€™s is a chronic and progressive movement that involves the malfunction and death of vital nerve cells in the brain, called neurons. Some of these dying neurons produce dopamine, a chemical that sends messages to the part of the brain that controls movement and coordination. Eventually, the amount of dopamine produced in the brain decreases, leaving patients sometimes unable to control movement normally.
One of the most common misconceptions is that it is a disease for older folks. We have people in our support groups who range in age from their 40s to 80s. Nationally, four percent of individuals are diagnosed before age 50. Locally, it is estimated that there are over 8,000 people with Parkinsonâ€™s in the Louisville Metro area and 14,000 in Kentucky.
The Parkinsonâ€™s Support Center provides we patients with knowledge and hope. The Center is the only organization of its kind in this region that is dedicated solely to supporting the needs of anyone with Parkinsonâ€™s disease and their families.
How can you help aid patients of Parkinsonâ€™s disease in Kentucky and southern Indiana? The one big fundraising event of the year, Denim & Diamonds, is coming up Friday, June 6 at the Marriott East Hotel near the interchange of I-64 and Hurstbourne Parkway.
The first of these â€œun-galasâ€ raised $30,000, and each event has been more successful than the previous.
This is a year of change at the Center as we move forward with a fresh perspective on the needs of valued clients, partners and donors. As the regionâ€™s premier organization dedicated solely to supporting Parkinsonâ€™s patients, we know the task is great. Thatâ€™s why there will be more Lunch & Learn classes this year. Also, weâ€™ve launched â€œThoughtful Thursdaysâ€ to bring individuals together to discuss new ideas and approaches to better living and healthier lives.
Want to learn more? Before Denim & Diamonds, we will hold an open house May 18 at the Centerâ€™s office in Middletown, 315 Townepark Cir., Ste. 100. If you need more information on Parkinsonâ€™s you can speak with our staff, check out our library offerings and enjoy some free snacks.
In October, make plans to attend the â€œLiving Well with Parkinsonâ€™s Symposiumâ€ and spend a day listening and interacting with experts from around the country discuss the latest findings in the war against Parkinsonâ€™s. More details will be available soon for the symposium.
A new Trivia Bowl fundraiser will be coming up this September in Louisville. Watch for more details on that, too.
April is Parkinsonâ€™s Awareness Month, a good time to learn more and to help support the programs of the Parkinsonâ€™s Support Center. Few things match the support and encouragement of others fighting the same battle. The Parkinsonâ€™s Support Center is here for the diagnosed and their families. Please visit our website www.parkinsonsupportcenter.org, or call us at 502.254.3388.