Couple battling Parkinson’s want others to know support is available
Published 12:00 am Monday, August 29, 2005
Special to the News-Herald
Michael J. Fox, Janet Reno, Billy Graham, Pope John Paul, Millie Kondrake – chances are their names are familiar, but chances are even greater that most of us know a friend, neighbor or family member who shares something in common with them – Parkinson’s disease.
Many Parkinson’s patients and their caregivers don’t know where to turn for help or just some understanding. John and Violet Hankins of Suffolk want to change that.
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John, diagnosed with Parkinson’s six years ago, and his wife, Violet, found both understanding and solace in a local Parkinson’s support group, and they want others to know that help is out there.
The Hankinses participate in a group that meets at 1 p.m. on the first Saturday of every month at the Church of St. Therese on Portsmouth Boulevard near Chesapeake Square Mall. The group serves residents of Portsmouth, Chesapeake, Suffolk and Western Tidewater. It is one of two in South Hampton Roads; the other meets in Virginia Beach.
According to Barbara Voelkel, coordinator of the Portsmouth group and a Parkinson’s patient herself, some meetings feature expert speakers, others are devoted to sharing sessions. Patients and their caregivers learn more about Parkinson’s from others with firsthand knowledge of the disease than from doctors.
&uot;It is important to be able to vent,&uot; she said.
&uot;I had the disease for about 10 years before I knew it. My first symptom was when I started having difficulty writing my name in front of someone.&uot;
John Hankins remembers his first warning sign as a slight tremor.
&uot;I also noticed that I subconsciously pulled my left arm when I walked.&uot;
Violet recalls that when John was first diagnosed, he was put on so many medications that he was like a zombie. After they changed doctors and medications, he was more like himself.
Both Voelkel and Hankins say that Parkinson’s progresses differently for everyone. For the first few years, Hankins didn’t see much change, but when it started to progress, it did so quickly. He says it now seems to have leveled off.
Voelkel said that she has been blessed because her Parkinson’s has progressed slowly.
&uot;Some people have super nuclear palsy, which goes like wildfire through the body,&uot; she said.
She noted that this is what Millie Kondrake, wife of columnist Morton Kondrake and the subject of the recent TV movie, Saving Millie, had.&uot;
&uot;It’s a weird disease,&uot; said Voelkel. &uot;There is a set of symptoms, and everybody gets a subset of them. One might lose the ability to speak, another’s foot shakes, while another might lose his sense of balance. That is dreadful, since it means you become confined to a wheelchair.&uot;
Hankins, who had worked as a carpet installer for years, had to quit work. He soon found that being less active did not help. He joined the YMCA and works with Mason Copeland, a personal trainer at the Suffolk Family YMCA, on a special program designed for him. This has helped him maintain a healthier weight and improve his muscle tone.
Hankins and Voelkel said that much is happening with Parkinson’s research, but more is needed. A procedure that is becoming more common is deep brain stimulation, a surgical procedure that triggers the brain to produce more dopamine, a natural chemical that is critical to the way the brain controls movements. Parkinson’s is caused by a shortage of dopamine, in which a person loses the ability to execute smooth, controlled movements.
&uot;The meds are incredibly expensive. I don’t know which is worse, the high cost of prescriptions or not enough research.&uot;
Voelkel also mentioned the Melvin Weinstein Foundation, which provides wheelchairs or other items to Parkinson’s patients who can’t afford them. The Foundation, which is locally based, is the only one of its kind in the country.
The Hankinses advise Parkinson’s patients and their families to get to a support group where there is advice for the patient and caregiver.
&uot;We learn so much more than just about the disease,&uot; Violet Hankins said. &uot;For example, most people don’t know that when they apply for disability, they have to wait six months with no income to become eligible. We found this out in the support group so we were better able to prepare. You learn about Parkinson’s and so much more.&uot;
She said the group believe that there are at least 10,000 people in Tidewater with Parkinson’s disease.
&uot;I can’t sit here all alone and fester in Parkinson’s; with the group, I know so much more. We not only learn about Parkinson’s, we learn to love each other,&uot; she said.
Voelkel encouraged Parkinson’s patients and their families to call her at 538-0655. The next meeting will be at 1 p.m.Saturday, Sept. 3, at the Church of St. Therese near Chesapeake Square Mall. The topic will be &uot;What to expect and how to deal with progressive stages of the disease when you live alone.&uot; The public is invited to attend.
Voelkel is hopeful that a cure is right around the corner.
&uot;When the key to Parkinson’s is found, the key to all other neurological disease will be found,&uot; she said.