Robert B. Russell has a message and he’s reaching out to schools, churches, community organizations -- anyone willing to learn about his sincere, heart-tugging, first-person experience with Parkinson’s disease.
He works hard every day to raise awareness about this neurodegenerative disorder and devotes a great deal of his time and talents to fundraising for research, services, support, and ultimately, a cure.
This past month, he’s spent quite a bit of time speaking to area high school health classes.
“I have the kids put on ski gloves and ask them to try and open a pill bottle with four different color Tic-Tacs inside and take the right ones out because that’s what it’s like for me to open my bottle of medicine and get my pills,” he said. “I put a three-pound weight on a leather work boot and have them walk across the room with their leg dragging, because I have to think about moving my legs when I walk instead of just automatically doing it.
“And I give them a giant marshmallow and have them put it in the back corner of their mouth, like a chipmunk, and try and say the alphabet because that’s what it’s like to try to talk,” he said.
“I use a lot of humor,” the 58-year-old Youngstown resident said. “The best thing to have is a sense of humor.
“But, I stress the fact that no one knows what causes Parkinson’s and there’s no definite medical test to see if someone has it,” he added. “You have to find a movement disorder specialist to diagnose it.
“And, there’s no cure -- yet,” he said.
More than 1 million people in the U.S. are living with Parkinson’s disease -- and that number is 10 million worldwide. Nearly 60,000 Americans are diagnosed each year.
There is no one way to diagnose the disease -- doctors monitor various symptoms and use diagnostic tests in concert with the symptoms to make the call. It’s especially difficult to do in the early stages of the disease, but doctors look for 2 of the 4 main symptoms to be present for a period of time. Those symptoms are: shaking or tremors; slowness of movement; stiffness or rigidity in arms, legs and trunk; and trouble with balance and possible falls.
There is no standard treatment, but it is tailored to each, unique case, in accordance with a patient’s symptoms. It may include: prescription medicines; surgery; medical marijuana; over the counter therapies; exercise; and/or clinical trials.
Russell was diagnosed more than a dozen years ago. He takes myriad prescriptions to help control his symptoms and tries to exercise daily. He also has had Deep Brain Stimulation (DBS) surgery twice at Buffalo General Hospital -- most recently in October. 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 to control the movement and help Russell move more smoothly.
Russell enjoys reaching out to educate the public, relishing the positive feedback he receives from high school students, in particular.
Kelly Ulrich, a health and adaptive physical education teacher at Lewiston-Porter High School, hosted Russell in her health classes for two days earlier this month.
“Mr. Russell’s presentation is interactive and fun for the students,” she noted. “The students put a shoe on with weights to learn how it ‘feels’ to walk in his shoes. They also put gloves on to open a medication container, with Tic-Tacs inside. This simulates the difficulty of opening his own medication.
“He uses these demonstrations so the students have more understanding about Parkinson’s disease,” Ulrich said. “Having the knowledge of how one lives with this disease will hopefully, one day, help these students be more understanding, empathetic, and patient if a loved one is diagnosed.”
Russell was returning to his old stomping grounds when he visited the Lew-Port campus in Youngstown. Due to his illness, he retired from Lew-Port after a combined 26 years as media associate and stage manager in 2011.
He also returned to his alma mater, Corning Painted Post High School (Class of ‘78), earlier this month and visited Wilson High School Friday.
It’s all about raising awareness about the disease, he said.
Russell also devotes a great deal of his time and talents to help fundraise for the Parkinson’s Foundation Western New York Chapter.
“A Night of Hope for Parkinson’s” 14th Annual Wine Tasting event is scheduled for 6:30 to 9:30 p.m. Friday <May 4> at the Millenium Hotel, 2040 Walden Ave., Buffalo. It is the local chapter’s second-largest fundraiser behind its Moving Day event. The evening will feature wines and foods, craft beer, locally distilled spirits and a wealth of basket auction items with many silent auction items, as well. Tickets are $50 presale and $60 at the door. Visit: parkinson.org/westernnewyork for ticket information or contact Chris Jamele, executive director of the WNY Chapter, at firstname.lastname@example.org or call 449-3795.<cq>
A few of Russell’s framed photographs will be offered at the auction, as he is also a gifted photographer.
The foundation is a non-profit that supports research and offers education and public advocacy related to Parkinson’s disease, providing services, programs and support throughout the 8 counties of WNY.
Russell recently talked about how he deals with the disease that has given his life a new direction as he continues to spread the word.
Q: How do you approach the students you speak to?
A: I don’t hold anything back.
I talk about my symptoms, the medicines I take, the DBS (Deep Brain Stimulation surgery). I show them a really neat X-ray that shows the wires going into my brain...It should go on the side of a Harley (laugh).
The kids are glued to my conversations.
I talked to five classes a day at Lew-Port and five more at Wilson. I come home and just pass out (laugh) but I get great feedback.
Q: You had your first DBS surgery in 2010. How did that compare to October’s surgery?
A: The first surgery was for the symptoms on the right side of my body. It helped loosen my muscles and make my joints more fluid and helped me get out of the rigidity.
The second surgery was to give me better balance and it’s helped make my speech a little better.
Q: How are you doing now?
A: I’m pretty much healed up from the surgery. I have a new remote control. I can adjust the voltage and shape of the electrical charge to the leads in my brain. There are 14,000 different variations of impulses and it’s about finding the right combinations through trial and error. I tell people I go home and play with my mind (laugh). Technology is just a wonderful thing.
My family and friends say I look better and that I’m more alive now and that I speak better. They say my overall appearance has improved dramatically. I feel much better, too.
Q: You are very active in fundraising for the local chapter. What’s in store this year after the Wine Tasting at the Millenium?
A: Do you know how much Michael J. Fox has raised through his foundation for Parkinson’s? $750 million. It’s unbelievable! I’m just trying to break $10,000 this year (laugh).
I hope to have my chili cookoff and basket auction again at the First Presbyterian Church in Youngstown in early September, and we’ll have Moving Day at the old Richardson-Olmsted Campus in Buffalo this year, instead of the Bisons stadium. We’re moving venues and I’m really excited about this. It’ll be Saturday, Sept. 22. It’s a family affair for us.
Q: Anything else you’d like to add?
A: My wife, Lori, is my caregiver and love of my life, and I couldn’t do this without her and our five kids.
Editor’s note: You may reach Russell for volunteer speaking engagements at email@example.com. To make a general donation or donate in Russell’s name for the Moving Day event, visit: firstname.lastname@example.org or parkinson.org/westernnewyork.