YOUNGSTOWN – Robert B. Russell, 53, has been battling the symptoms of early onset Parkinson’s disease for nearly a decade.
But, armed with a profound sense of humor and strong family support, he has found a way to sneak around most obstacles thrown in his path – albeit sometimes more slowly than he’d like.
Parkinson’s disease affects 1.5 million adults in the U.S., most over age 60. It’s a progressive disorder of the nervous system that impairs movement, and it may cause tremors and rigidity.
There is no cure, but medicine may help lessen the symptoms. Exercise is key, and in some cases, such as Bob Russell’s, patients undergo deep brain stimulation surgery to help affected areas of the body move more smoothly. This treatment uses a surgically placed medical device, similar to a cardiac pacemaker, to deliver carefully controlled electrical stimulation to precisely targeted areas of the brain.
Many know Russell from his long involvement with Boy Scout Troop 829 in Youngstown and from his combined 26 years at Lewiston-Porter schools. While he was forced to retire from a job he loved in 2011 as Lew-Port’s media associate and stage manager, this Youngstown resident has still found a way to contribute to the community, using his many talents.
This past year, he produced a 90-second commercial for Moving Day, sponsored by the National Parkinson Foundation Western New York, which can be found on YouTube.
And he’s gearing up to participate in the second Moving Day on Sept. 7 at Coca-Cola Field in Buffalo.
Russell’s daughter, Laurice, was recently named chairwoman of the event. Last year, nearly 500 participants – individuals and teams – collected pledges of $68,000 for research and education in the inaugural Moving Day event in Buffalo.
Moving Day will feature a 3-mile walk through downtown Buffalo to Erie Basin Marina (there’s also a 1½-mile “bailout”); a “Movement Pavilion” with modified yoga, dance and tai chi; a children’s arts and crafts area; and refreshments.
A recent chat with Bob, Laurice and Bob’s wife, Lori, was educational, inspirational and sprinkled with humor, as this family navigates uncharted waters – together.
When did you find out you had Parkinson’s?
Bob: I was experiencing clumsiness, but I thought it was nerve damage from neck surgeries I had had, and we were visiting Lori’s doctor (a neurologist) for an exam when he stopped and asked me what my story was. He told me to make an appointment to see him. He put me through some tests and told me I had early onset Parkinson’s.
Lori: That was January 2005. We had just been married six months.
Bob: I had clumsiness, my right hand would twitch, my right foot started to drag, and I had a sense of fog coming over me that I couldn’t shake.
What could they do for you?
Lori: At first, they gave him medicine.
Bob: And, the whole premise behind Moving Day is to get out and move because if you don’t use it, you lose it.
Laurice: They want you out walking or doing alternative exercises, like modified tai chi or yoga or dance.
Bob: Anything to keep your body moving and help keep your joints going.
When was the deep brain stimulation surgery?
Lori: The surgery was done in 2010 to improve Bob’s quality of life. His life is dictated by medicine, and if you have to stop and remember to take it every two hours, that decreases your quality of life. But if you can stretch it to every four hours, for example, that increases your quality of life, and that’s what the surgery does.
Our brains work on electrical impulses, and the medicine controls that (artificially). The DBS surgery uses an electrode to send the electrical impulses to the brain to control the movement in his body, instead of using medicine (as frequently), and it makes him able to move more smoothly.
Bob: They did the DBS surgery at Buffalo General Hospital. It’s incredible – the technology is just amazing.
Lori: But, he developed a staph infection a month later, while we were in Tampa, Fla., and we had the most fantastic care at Tampa General Hospital.
Bob: Six months later, they had to put in a new stimulator (once he was infection-free).
Lori: When he had the first surgery, we saw an amazing effect, but it was less effective after the staph infection. It took a year of programming (adjusting the equipment) before we definitely saw improvements. He’s back to taking medicine every two hours now, and it’s constant juggling to get the right dosage, because too much medicine makes him dyskinetic, and he starts to tremor, and it can also happen with too little medicine. He’s also starting to have some voice and cognitive issues.
Most of the time, Bob’s able to do everything, but there are other days he can’t get dressed by himself. This disease is so unpredictable. But Bob is amazing. He never, ever stops. His nickname is “Clarkie,” for Clark Kent, who is Superman.
Laurice: This doesn’t restrict – but modifies what he does. He still helps me fix my car, and he walks and hikes. The key is to keep moving – that’s huge for him. He’s got five kids ages 20 to 27, with lots going on. So we modify the way we do things and our expectations.
Lori: Bob still mows the lawn, and he even put a new toilet in right before his knee surgery (he had total replacement surgery in July). It doesn’t stop him. He’ll say, “But I can’t do things as fast as I used to,” and I’ll say, “Hon, at least you’re still able to do it.”
Bob: I’d never be able to do this without my family. My wife is always pushing me, and my kids have been with me every step of the way.
Laurice: He’s a real trouper. There was little we did in this family without each other before, and that hasn’t changed. Intense family involvement is the only way we’re getting through this.
Bob: Anybody who wants to, can walk in the Moving Day or donate in my name.
Registration for Moving Day begins at 8 a.m. Sept. 7 at Coca-Cola Field. For more information, visit www.npfwny.org or call Laurice at 531-5609. She is still looking for sponsors and volunteers as well as donations of food and supplies.
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