Disease is a group of inherited disorders that cause nerve damage, typically in the peripheral nerves in the arms and legs
By Norah Machia
After working in the advertising field and later as a card dealer for the Turning Stone Resort Casino in Verona, Michael Casey decided to return to college and obtained his bachelor’s and master’s degrees in education at the SUNY Oswego.
Although he was certified as a social studies teacher and taught in the Liverpool Central School District, Casey eventually found his calling working as a teaching assistant in the school district’s special education department for nearly 18 years.
But toward the end of his career, Casey’s life took a drastic turn. It started with an occasional fall while walking between classrooms at Liverpool High School. Eventually, Casey could not manage to travel through the hallways without struggling.
“I was actually holding onto the walls to get from classroom to classroom,” he said.
He retired earlier than planned and started seeking answers to his condition through numerous therapists and neurologists.
“It really got to the point where it was very difficult for me to get around,” Casey said. The lack of a diagnosis was also causing him to become depressed. “Nobody could offer any reason for all my problems,” he added.
A fall on the ice in 2017 would give him that answer. The accident resulted in compressed vertebras in his neck and after having successful surgery, a neurologist diagnosed him with a neuromuscular disease called Charcot-Marie-Tooth.
“It was actually good news,” said Casey. “After so many years, I finally found out what was going on with me.”
Also referred to as CMT, the name stems from the three doctors who first discovered the disorder in 1886 — Jean-Marie Charcot and Pierre Marie from France and Howard Henry Tooth from the United Kingdom. Casey has sought humor to help with his diagnosis, preferring to refer to the CMT acronym as “Can Make Trouble.”
“There are various types of CMT, which causes destruction of the nerves,” he said. “In my case, I have drop feet and balance issues. I use an ankle and foot orthotic and a walking stick. Some people must use walkers to keep moving.”
Charcot-Marie-Tooth disease is a group of inherited disorders that cause nerve damage, typically in the peripheral nerves in the arms and legs, according to the Mayo Clinic. It’s also called hereditary motor and sensory neuropathy and although it’s typically an inherited condition, it may also develop as the result of a new or spontaneous mutation.
The disease results in smaller, weaker muscles, a loss of sensation and muscle contractions and difficulty walking, according to the Mayo Clinic. Foot deformities such as hammertoes and high arches also are common and while symptoms usually begin in the feet and legs, they may eventually move to the hands and arms. The severity of symptoms varies greatly for each individual.
Although the disease usually affects people in a slow progression and there is no cure, it is not a fatal disease.
Keeping a positive attitude can help to maintain a good quality of life, said Casey.
“There are different types and for some people, CMT may also affect their breathing, hearing or speech, but by itself, it’s not life-threatening,” he said. “I have to be careful, because there is always the possibility for me slipping and falling. I do have a slight shake, but it’s not Parkinsons’s disease.”
One of the best ways to deal with CMT it to “keep moving,” said Casey. After his diagnosis, he reached out to the Charcot-Tooth-Marie National Association for more information and support in starting a local chapter. At that time, Casey felt as if he was the only person with the neuromuscular condition.
“The national group has been helping me in so many ways to get the ball rolling,” he said. “We now have a CMTA branch in Central New York. We’re small in number, but we are open to all people who suffer with CMT.”
The local group not only offers information about CMT and the research that is being done to find a cure for the neurological disease, but it also offers emotional support to help people with CMT cope, Casey said.
“There is no negativity allowed in the group, we only talk about the good things, like the efforts being made for new medications, surgeries and eventually a cure,” he said. “We also want people to know they are not alone and that other people have this disease.”
Local CMTA Chapter Sponsors Sept. 14 “Syracuse Walk 4CMT”
The Central New York chapter of the CMTA will hold its sixth annual “Syracuse Walk 4CMT” fundraising event Sept. 14 at Willow Bay in the Onondaga Lake Park, 3832 Long Branch Road, Liverpool. The half-mile walk starts at 9 a.m., but it’s optional.
“Many people may not be able to walk, so it’s not mandatory,” Casey said. “It is mandatory to have fun. We will have breakfast goodies for those attending the event while supplies last.”
There will also be music, entertainment, raffles and a playground for “all the kids and those who never grew up,” said Casey. Each person who collects $100 will receive a “Walk4CMT” T-shirt. The funds raised will go toward finding new treatments and a cure for CMT. The local chapter is also seeking in-kind donations and raffle prizes.
For more information, visit www.cmtausa.org/syracusewalk
Or email Casey directly at cmtsyracuse@gmail.com