By Ashley M. Casey
Associate Editor
Like many fundraisers in 2020, the second annual Walk 4 CMT is transitioning from an in-person event to a virtual one. The walk was slated to take place Sept. 19 at Onondaga Lake Park, but now participants have until Sept. 30 to raise money.
“We’re changing the rules a little bit,” said Mike Casey, branch leader for the Syracuse chapter of the Charcot-Marie-Tooth Association. “You can walk, ride, kayak, swim, whatever and say, ‘Hey, I did this for CMT.’”
The CMT Association’s slogan is “Funny Name, Serious Disease,” as Charcot-Marie-Tooth disease is named after the three doctors who discovered it in the late 1800s. CMT is a group of hereditary disorders that cause damage to the peripheral nerves in the limbs, hands and feet. Symptoms of CMT include difficulty walking or maintaining balance, muscle spasms, high arches or flat feet, and tingling or burning in the hands and feet. There is no cure and it is believed to originate from a genetic mutation.
“They don’t know exactly what causes it,” said Casey, who lives in North Syracuse. “There’s other people who are more severe who may actually be wheelchair-bound or have trouble breathing or swallowing.”
Casey’s CMT symptoms forced him to retire from his teaching career in the Liverpool Central School District and quit his beloved pastime of golf. He needed neck surgery after he fell on ice and hit his head.
“I was walking funny and people were watching me because they were afraid I was going to slip and fall,” he said. “It took nearly seven years to get a diagnosis.”
There are many types of CMT. Casey was diagnosed with CMT type 2.
“Most people who have CMT category 1 have the myelin sheath separate from the nerve. Mine is inside the nerve,” Casey explained.
Treatment for CMT involves easing pain and symptoms. Casey wears braces on his legs called ankle-foot orthotics (AFO) and uses a walking stick.
“It’s a vast improvement. If I don’t have them on, you can really tell,” Casey said. “It makes me walk like the Frankenstein monster.”
While many people with chronic illness say they have good days and bad days, Casey said he has “good days and better days.” He tries to stay upbeat and encourages his fellow CMTA members to do the same.
“I don’t like doom-and-gloom-type meetings,” he said. “The one thing that I stress is we’re all in the same boat. We all have this problem. … Sometimes I’m obnoxious, I’m silly.”
Casey uses humor to cope with CMT. When people ask about his walking stick, he tells them, “This is my costume for Halloween. I’m playing the part of Moses. I’m a Jedi knight. I can play horsey.” When he encounters someone using a power chair, he asks, “How do you do for gas mileage?”
Humor, Casey said, helps break down the stigma of a visible disability.
“I think people are somewhat afraid. We’re just like everyone else — we have a little bit of a problem. Most people are really cool and you do have some [who are not],” he said.
Another key to staying positive is keeping busy, Casey said. He and his wife like to travel and volunteer with St. Margaret’s food pantry and Joseph’s House.
“You have to keep your spirits up,” he said. “Find something to do. If you’re going to wallow around and worry about things, what good is that?”
Proceeds from the Walk 4 CMT go to CMTA’s STAR (Strategy To Accelerate Research) program. Casey said local sponsors for the Syracuse walk have been very generous. They include Syracuse Orthopedic Specialists, Price Chopper, Aldi, Wegmans, Byrne Dairy, Stewart’s Shops and Carvel in North Syracuse. The top fundraiser will receive an Aldi gift card.
“Everybody’s been nice and they want to help,” Casey said.
While participants can’t gather in person at Willow Bay as planned, CMTA Syracuse will hold a virtual face mask fashion show at 11 a.m. Sept. 19 via Zoom. The entry fee is $5. A prize will be awarded to the wearer of the best homemade face mask.
Visit cmtausa.org/syracusewalk to sign up for the virtual walk. Registered participants who raise $100 get a Walk 4 CMT T-shirt. For more information, contact Mike Casey at [email protected].
You may also mail donations to CMTA at P.O. Box 195, Glenolden, PA 19038.
