What do Deborah Kerr, Janet Reno, and Linda Ronstadt have in common? They’ve all experienced Parkinson Disease (PD). While men are diagnosed with PD at almost twice the rate as women are, this means there are more women partners responsible for Parkinson’s care, which is challenging and difficult.
The National Institutes of Health (NIH) describes Parkinson’s disease as “a disorder of the brain that leads to shaking (tremors) and difficulty with walking, movement, and coordination. Nerve cells use a brain chemical called dopamine to help control movement. Parkinson’s disease occurs when the nerve cells in the brain that make dopamine are slowly destroyed. Without dopamine, the nerve cells in that part of the brain cannot properly send messages. This leads to the loss of muscle function. The damage gets worse with time. Exactly why these brain cells waste away is unknown.”
In the U.S. the number of People With Parkinson's (PWP) exceeds those with MS, ALS, Huntington’s, and Muscular Dystrophy, combined. Motor symptoms are common and can have a major impact on Parkinson’s patients. Cognitive impairment, ranging from mild memory difficulties to dementia, and mood disorders, such as depression and anxiety, occur frequently. Also common are sleep difficulties, loss of sense of smell, constipation, swallowing and speech problems, unexplained pains, drooling, and low blood pressure when standing.
Women in Hampton Roads have rallied to the cause, many helping with the annual fundraiser for the local chapter of the American Parkinson Disease Association (APDA-HR). Some have PD, some are caregivers, and some just see the need to help a fledgling organization. Laurie Wagner Horton, a local mortgage banker with OVM Financial, met Ann Perkins, then president of APDA-HR and a PWP of 15 years, and decided she wanted to help. Laurie took on a major role, the food tent at the April event in 2012, has since become a board member, and spearheaded the bike ride portion of this year's April 11th event.
The local chapter provides a support network for PWP as well as their caregivers and also inspires people to seek positive change. For example, Dr. Gail Mottola, who cared for her husband, Lou, found it challenging to push his wheelchair through entrances with panel-type door hardware. “Research proved the door hardware was not in ADA compliance,” she says. “Together, we founded Let’s Open Doors to educate and advocate the voluntary change from this outdated 1970s door hardware to ADA compliant door hardware for access without harm.” Gail continues her work to improve quality of life for all. She’ll be in the educational pavilion at the April 11th event.
Gloria Siegel, physical trainer, and Melody Lubich, yoga instructor, are two examples of women who have undertaken an extra challenge: to develop exercises specific to PD for anyone who wants to learn them. Proper medication and exercise are the two top ways to combat symptoms and can even slow down progression. APDA-HR helps those with PD connect with trainers and instructors, like Gloria and Melody.
The primary mission of APDA-HR is to “ease the burden and find a cure.” Carmen Fuentes, M.D., movement disorder specialist, says the chapter is “a wonderful place for a person with any stage of Parkinson’s Disease and/or caregivers and an excellent resource for local services for improved care information.” The chapter also offers a medical equipment loaners program, she notes. Above all, the APDA-HR provides invaluable help to keep patients active, informed, and hopeful on finding a cure for PD and other Parkinsonian syndromes, Dr. Fuentes says.
APDA-HR joined the national non-profit in 2000, and Our Lady of Perpetual Help Assisted Living in Virginia Beach donated office space. Since 2000, APDA-HR has started eight support groups, hired a part-time office manager, set up a website, and created the Parkinson Boardwalk Stroll and Roll. The annual event began with just 75 people in 2005 and last year attracted well over 500. The goal this year is to register 1000. Join us in the fight to cure PD.
APDA Parkinson Boardwalk Stroll and Roll will take place April 11 from 10 a.m. to 1 p.m., at Neptune Park, 31st and Oceanfront. Go to hrparkinsons.com to register for the walk and/or the optional bike event. “In memory” or “in honor of” details can be added at the final page. You can also register the day of the event.
APDA-HR welcomes volunteers to help with the event and assist with other facets of the organization. Currently, the chapter is seeking a leader on the Southside for a Young Onset Group. For more information, call 757-495-3062 or visit hrparkinsons.com.