By Susan Mikula Campbell
Youngstown resident Bob Russell has a story to tell about Parkinson's disease. It's not actor Michael J. Fox's story or the late and "greatest" boxer Muhammad Ali's story.
It's why he and his wife, Lori, have organized the first Chili/Cornbread Cookoff and Basket Auction to be held this Sunday, Oct. 2, at First Presbyterian Church, 100 Church St., Youngstown.
Russell, longtime Lewiston-Porter schools stage manager, local Scout leader and home builder/remodeler, was diagnosed with early onset Parkinson's more than 12 years ago at the age of 45. He is the father of five children, ranging in age from 30 to 23, all Lewiston-Porter High School and college graduates.
Russell will add proceeds from the cookoff to the $7,000 he and his team raised for the National Parkinson Foundation of Western New York's Moving Day on Sept. 11 in Buffalo. He's already listed as the top collector for that event.
Parkinson's is a progressive degenerative neurological disease of the brain.
"Most people and a surprising number of doctors know very little about this disease that can't be diagnosed clinically and has no cure ... yet!" Russell said. "I won't stop telling my story until I can start by saying, 'I used to have Parkinson's. ...' "
The Russells are challenging those who believe their recipes are the best to prove it by bringing a pot of chili or pan of cornbread to the church from 4:30-5 p.m. Sunday. Entry in the contest is free.
Beginning at about 5:15 p.m., the public can sample the contestants' offerings for $10 a person or $25 per family.
Check out the basket auction starting at 4:30 p.m. Donations of additional baskets also can be dropped off. Basket auction tickets are $5 a sheet; 50-50 tickets are $1, or an arm's-length for $10.
There also will be a silent auction of artwork donated by local artists. Auction drawings begin at 6:30 p.m. and those with entries need not be present to win.
Lori Russell has supported her husband's fight against Parkinson's ever since he was diagnosed six months after their wedding in 2004. She is active in planning and publicity for the Buffalo Moving Day and points out 60 percent of the funds go for local support systems right here in WNY, while the other 40 percent funds research to find a cure for this terrible disease.
The chili cookoff event was her idea.
"I want to raise awareness so that people can be diagnosed earlier and get the proper care sooner," she said. "Not only that, I love basket auctions!"
Western New York has a significantly higher rate of Parkinson's than normal, according to Bob Russell. In addition, a nationwide push is underway to get firefighters involved in the fight against Parkinson's, because they are up to 10 times more likely to contract this disease due to the inhalation of toxins on the job.
Five-alarm chili, anyone?
Russell isn't sure what caused his own encounter with the disease. Exposure to photo chemicals or pressure-treated lumber could have played a part, or even the fact that he has lived and worked downstream from chemical and nuclear waste sites for 35 years.
"The disease took away the job that I loved; it continues to steal my talents right from under me; it destroyed my plans for retirement; but, most of all, it wastes my time. There is nothing more precious in life than time," he said.
Faith in God, support of family and friends, a sense of humor and a quest for information and guidance have brought him through the fight thus far, Russell said.
After he could no longer do his job without help, he took an early disability retirement. Since then, he has been active with the NPFWNY. This group can answer questions on Parkinson's, sponsors support groups for both caregivers and patients, and offers a variety of therapist and educational symposiums. NPFWNY has held Moving Day, designed to keep Parkinson's patients active, as well as raise funds, for the past five years.
For more information on the cookoff, contact the Russells at 716-534-3601 or 716-745-7547.
Russell produced a video on the 2015 Moving Day in Buffalo, where he was honored as the WNY "face" of Parkinson's disease. The video can be seen at www.youtube.com/watch?v=wuwLFZK994M.
To contact the NPFWNY for more information on Parkinson's disease, call 716-449-3795, or email [email protected]. National headquarters offers a helpline at 1-800-473-4636, or email inquiries to [email protected].