“Moving Day” is just around the corner and Youngstown volunteer Robert “Bob” Russell is on the move himself, despite -- or, he would insist because of -- the daily challenges he faces living with Parkinson’s disease.
Battling the neurodegenerative disease for more than a dozen years now, Russell is dedicated to exercising, educating and volunteering, particularly for this cause.
Moving Day events are held in cities across the U.S. throughout the summer by local chapters of the National Parkinson Foundation. The Western New York Chapter’s Moving Day will open with registration at 8 a.m. and a 3-mile, family-friendly walk at 10 a.m. on Sunday, Sept. 11 at Coca-Cola Field in Buffalo.
Moving Day is the most significant fundraiser of the year for the local chapter and it is billed as a “celebration of movement,” featuring the pledge-supported walk, yoga, Tai Chi, dance, drumming and more.
“You have to keep moving,” Russell said recently, on his way to Buffalo to help plan the upcoming event. “Move it or lose it. To keep moving is the best way to fight off the progression of this disease.”
The disease is a neurodegenerative brain disorder that progresses slowly in most people. There are four main motor symptoms; tremors, slowness of movement, stiffness and trouble with balance. There is no cure, but medicines and therapies are used to treat symptoms.
Russell’s struggles with Parkinson’s forced an early retirement from the Lewiston-Porter School District, where he served as a media associate and stage manager.
He returned to Lew-Port this past year, to speak to students about the disease.
“I told them, ‘I’m an average guy,’” he recalled. “I told them where I came from, what I did, and I told them about Parkinson’s. I asked for volunteers and I put an ankle weight on a hiking boot and had them walk across the room. I had them put a marshmallow in the corner of their mouth and try and say the alphabet. I gave them a pill bottle with orange Tic-Tacs and had them put on a pair of ski gloves and said, ‘Now, get the pills out of the bottle and into your mouth.’
“By the end, every single person was listening to me,” he said. “They were respectful and attentive and thanked me for explaining this to them.”
Russell also draws on his background -- and his continued work as a talented photographer -- to create a new video each year to promote Moving Day, which he posts on YouTube.
Involved since its beginning, Russell and his wife, Lori, and their five adult children continue to be involved as volunteers for Moving Day.
“It’s a family affair,” he said.
Despite miserable weather and a conflict with the Buffalo Bills’ home-opener, last year’s Moving Day still raised $78,000 and attracted 600 people, according to Christopher Jamele, executive director of the local chapter. Walkers can be individuals or teams.
“This is our fifth year, and we’re hoping for 1,000 walkers and to raise $90,000 or more,” Jamele said.
Organizers are still looking for donations, participants and volunteers. Information may be found at www.movingdaybuffalo.org or by calling Jamele at 449-3795.
“Sixty percent of what we earn stays here and 40 percent goes to the national foundation,” said Russell. “So, we see the benefits of what we raise right here. It goes for speech and physical therapy, for boxing and dancing and Tai Chi, and for support groups.”
“Our mission is to improve the quality of life for the Parkinson community in Western New York,” Jamele said.
This year’s event will be held on a particularly poignant day for first-responders and the local chapter has chosen James “Jim” Schaefer, of Lancaster, as its new “face” for Moving Day, an honor Russell held last year.
Some research has shown that firefighters have a greater chance of receiving a Parkinson’s diagnosis than the average person, Jamele said. Various studies have shown it can be a three to 10 times greater chance of such a diagnosis.
Over 22 years, Schaefer had worked his way up to first assistant chief in the Village of Lancaster’s Fire Department before a Parkinson’s diagnosis altered his path four years ago at age 44.
He now serves as the fire department’s historian -- fitting for a man who traces family right back to the department’s start in 1874. He took the reins as historian from his late grandfather, Norbert Adolph. Schaefer’s older son, Joshua, 18, is the sixth generation to serve in the fire department and he said his younger son, Aaron, 16, is in the department’s Explorer Post.
“The fire department is my second family,” he said.
Schaefer said he hopes through his new voluntary role with Moving Day to help “generate awareness.”
“Michael J. Fox and Muhammad Ali made great strides with this, but we must keep this going,” he said. “We’re getting close to finding a cure and it’s very critical to continue the great work scientists have done.”
“There is a lot of misunderstanding about this disease,” he said. “People might say, ‘Oh, so your hand shakes a little’ and don’t know just how serious this is. And I think our pollution is helping cause this. And, you are 10 times more likely to get this if you are a firefighter. We’re trying to spread the word about this.”
“But don’t feel sorry for me,” Schaefer added, “There have been so many nice people that I’ve met….I guess I’ve become wise before my years and I’ve learned what’s important in life.”
Russell, now 57, recalled that he and Schaeffer met at a Parkinson’s Young Onset support group meeting.
To commemorate this year’s Moving Day, the Lancaster Fire Department will display its new, 100-foot aerial ladder truck at the Coca-Cola Field event.
“This is a chance for firefighters to recognize the heroics of Sept. 11, as well as the hazards they face on the job,” Jamele said.
“When we pick someone to be the new face of the event, we do this to let people know they are not alone and that the average person can make a difference,” he added. “We’re all in this together and maybe we can make things a little bit better.“
As many as 1 million Americans have Parkinson’s, with 50,000 to 60,000 new cases diagnosed each year. Jamele noted that Western New York has an unusually high concentration, with 9,000 people battling the disease here.
“Per capita to our population, that’s a pretty high number,” said Jamele. “And for every person who has Parkinson’s, there is a caretaker, so it affects even more people.”