Parkinson's Disease, a progressive neurodegenerative condition, is non-discriminatory: You can be Michael J. Fox, just turning 30 and at the peak of a brilliant acting career; or you can be in your 70s and retired, male or female.
While scientists are researching a genetic link, you may carry the gene without developing the disease — or develop the disease without any family history.
As Parkinson’s progresses, patients typically develop such symptoms as tremors on one side of the body, slowness of movement, balance problems and stiffness. At first, these may be mistaken for the wear and tear of stress or aging, rather than be specifically associated with Parkinson’s.
Further complicating the diagnosis is the fact that there is currently no blood test to determine whether one has the disease. And there is currently no cure.
Yet there is hope.
Just ask Ronald Robbins. Diagnosed six years ago, Robbins retired from a high-power job in the fields of venture capital and private equity, but became active as a volunteer and board member for the Parkinson Council, the Philadelphia-area chapter of the National Parkinson Foundation. Funds raised by the local council stay in the Philadelphia area to support programs and research at area hospitals.
Is his path easy? Hardly. A “mover and shaker” before retiring, and seen by his family as “Mr. Fix-it,” he has had to adjust to the reduced mobility caused by Parkinson’s. Yet he perseveres. While he is not able to perform all the repairs his family had once relied on him to do, he continues to do those that he can.
“It’s important to stay active,” he says, “and focus on what you can still do.”
Certainly staying in touch with what is around you helps. To that end, the local council is sponsoring “Parkinson’s Night at the Ballpark,” a benefit, on Wednesday, July 10, when the Phillies square off against the Washington Nationals.
Robbins says exercise is important, and he cites as a good example “Dance for P.D.,” started by the Brooklyn Parkinson Group, in collaboration with the Mark Morris Dance Group. The program involves dance instruction for patients as a way of fostering both emotional and physical balance.
This program, now international in scope, offers classes in the Philadelphia area (danceforparkinsons.org ).
But, Robbins cautions, “not everyone can do all of these things,” and patients need to consider their own needs and limitations when deciding which activities best suit them. The balance, perhaps, lies in this tightrope walk between what once was possible and what is still possible — and finding the best fit.
He and his daughter, Debra Finger, agree that family members can be crucial in helping to maintain that balance. He credits his daughter with helping to keep his spirits up, not letting him stay down. And the two cite the value of family members living close by, allowing family to gather for dinners and other events.
Robbins has also remained active and received support at Har Zion Temple, where he has been a member since age 6. He now serves on its board of directors and is a trustee.
Robbins not only receives support but also seeks to give it to others. He is involved with a mentoring program the Parkinson Council started and values the opportunity to assist newly diagnosed patients on a one-on-one basis.
For example, having undergone a surgical procedure known as Deep Brain Stimulation, which involves the implantation of a “neurostimulator” (which he compared to a heart pacemaker) into the brain to activate areas that control movement and block impulses that cause tremors, Robbins was able to explain the procedure to a fellow patient and assuage some of her fears.
Finding a cure is the longer-term hope for Robbins and others who work with the Parkinson’s Council, although some promising work is now being done in the area of earlier diagnosis, according to neurologist, Dr. Matthew Stern, director of the Parkinson’s Disease and Movement Disorders Center at the University of Pennsylvania Health System, located at Pennsylvania Hospital.
Also a professor of neurology at Penn, Stern is looking at genetic risk factors, especially related to mutations in the LRRK2 gene.
Yet he advises family members not to rush out and get genetic testing just yet, since the presence of genetic factors does not necessarily result in the disease. Work is still being done in this area.
For more information, visit the National Parkinson Foundation website at: www.parkinson.org ; the Parkinson Council site at: www.theparkinsoncouncil.org ; or the Michael J. Fox Foundation at: www.michaeljfox.org .