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Press Release

FOR IMMEDIATE RELEASE:

CONTACT:
Kathleen Kelley
Parkinson Foundation of the National Capital Area
Voice Phone Number: 703-678-5782
FAX Number: 703-490-8910
Email Address: kathy@parkinsonfoundation.org
Website URL: www.parkinsonfoundation.org

Daisy Harley-Jordan, who lives in Baltimore, has three or four full-time jobs. One she gets paid for: as an electronic manufacturing specialist on the 3:30-to-midnight shift at Northrop Grumman Corp. facility near BWI Airport. But she works the equivalent of another two or three full-time jobs at her home caring for her 79-year-old mother, Alice Harley, who is bedridden with a brutal combination of Alzheimer’s disease, which she contracted in 1998, and Parkinson’s disease, which came along four or five years later.

When Daisy, who is 51, is at work, a friend, Trilvia Scott, looks after her mother. But when Daisy is home, she’s always on duty. “It’s like running a little medical center in the house that’s operational 24/7.”

It’s also exhausting. That’s why Daisy was so thrilled when she found out through a Baltimore caseworker that the Parkinson Foundation of the National Capital Area offers grants to people like her so that they can get a needed break from the routine of caring for relatives with advanced Parkinson’s.

Daisy applied for a grant and got one—to pay for five days for her mother over last New Year’s at a suburban nursing facility. “I was so happy to know that my mom would get good care in a place that I trusted, where I wouldn’t have to worry that she’d be abused.” Daisy, with Trilvia and her 9-year-old daughter, spent that time at a resort in the Eastern Shore.

“You need time to be restored,” she says gratefully. “When I’m at home, I’m always on edge, looking for the next opportunity to exhale. But you can’t let yourself get burned out.”

In many cases, caregivers are the forgotten victims of Parkinson’s disease. But not to the Parkinson Foundation of the National Capital Area. The foundation annually gives some money to research for a cure for Parkinson’s. But it hasn’t lost sight of the people who already have the disease and need relief from its ravishing symptoms—tremor, imbalance and postural problems in the early stages; incontinence, depression and cognitive disorders later on and ultimately a host of other disabling infirmities.

Nor has it forgotten their caregivers, the countless people like Daisy who give uncomplainingly of their time so that their loved ones can live a little bit better. There are lots of sources of research funds for Parkinson’s disease; someday, someone will be famous for developing the cure. The PFNCA is one of the few organizations that are trying, without hope of making headlines, to do something before that someday comes.

How does the PFNCA get the funds it needs to make its respite-care grants to people like Daisy? Chiefly through an annual fund-raising event. This year’s will be on April 4: an evening of Broadway show songs at the Strathmore Music Center, 5301 Tuckerman Lane, North Bethesda, just outside the Beltway off Rockville Pike. “A Night on Broadway” will feature songs sung by Brian Stokes Mitchell at 8 p.m. following a dinner at 6 p.m. at the Strathmore Mansion. Sponsors and major contributors will attend a post-concert champagne reception with Mr. Mitchell at the Mansion.

The evening is sponsored by Ambassador Henry and Mrs. Charlotte Kimelman. The dinner sponsor is Marge Levin and family; Shelley Kay and Al Policicchio and the Kay Family Foundation are sponsoring the concert. Individual tickets are on sale for $150 apiece. Those who want to become sponsors or to buy tickets to benefit the Parkinson Foundation of the National Capital Area should call Banu Luu at 703-287-8729.

Daisy Harley-Jordan will be glad you did. “Thank you, Parkinson Foundation and your partners,” she says, “for giving us a well-spent respite.”

Written by Joel Haveman