By Sandra Diamond Fox
ALS, Alzheimer's and Parkinson’s all wrapped up into one — that’s how Miles Concannon describes Huntington’s disease.
The Torrington man is on a mission to bring awareness to the disease, which has been traced in his family to the late 1800s.
For the third year, he’s participating in the 15th Huntington Disease Society of America’s Team Hope Walk, which begins at 9 a.m. May 23 at Chatfield Hollow State Park in Killingworth.
Huntington's disease is a brain disease passed down in families that causes deterioration in a person’s physical, mental and emotional abilities.
Team Hope is held in more than 100 cities across the U.S., and has raised more than $14 million for Huntington’s. There are 41,000 people with symptoms in the United States, and more than 200,000 at-risk of inheriting the disease. In Connecticut, there are more than 3,000 people with the disease.
Looking back, Concannon said he can recall the time he first noticed signs of Huntington’s Disease in his father, who shares his name.
“In my late teens, I bowled with him at the (old) Torrington Bowling Center,” said Concannon, who is now 69. “He was an amazing duck pin bowler and he was as smooth as silk when he threw the ball.”
One day, that changed.
“I noticed he had a weird little hop in his delivery,” Concannon said. “I said, ‘that’s not my dad.’”
The condition soon began to affect his father’s job as a mail carrier, according to Concannon.
“People used to call up and say the mailman was drunk,” he said. “They sent a postal inspector out one day to follow him, and when he came back to the office, he told the people in charge at the Torrington Post Office ‘that man is not drinking at all during the day, but there is definitely something wrong with him.’”
After suffering a serious fall on the job, Concannon’s father had to resign. He later moved to a veterans home and hospital, where he died at the age of 73.
“The disease doesn’t kill you,” Concannon said. “You die from complications from it.”
Two of Concannon’s brothers also had the condition. His youngest brother, Rob, was diagnosed very young, in a form of juvenile Huntington’s disease.
“He got a death sentence at age 30,” Concannon said.
As a young man, Concannon said he lived recklessly, since he always had a fear he would get the disease.
“It was always in the back of my mind — if a parent has Huntington’s disease, flip a coin — you have a 50-50 chance of getting it,” he said, adding it doesn’t skip generations.
“I did some crazy things like drag racing ... since I thought I could die tomorrow,” he said.
As a disc jockey for WAPJ-radio in Torrington, Concannon has now become a voice for the disease.
“I go by the Mississippi Mudcat host of Mudcat Blues and every hour that I'm on the air I have created PSAs by my daughter, Kristen Robustelli, ... to bring awareness to Huntington’s disease,” he said.
Additionally, he has donated close to $25,000 over the past decade toward research for a cure.
“Maybe some day, we’ll hit a home run,” he said.
Colchester resident James McGann, 69, who was diagnosed with Huntington’s disease 15 years ago, said he’s thankful every day he’s alive and healthy.
“I’m lucky it hasn’t been as severe,” he said, adding about half his relatives on his mother’s side had the condition.
McGann said his symptoms — such as jerky movements — have been under control with medication. He’s able to drive and go for long bike riding trips with his wife, Susan, who is president of the Huntington’s Disease Society of America-CT Chapter
He’s working with a team of experts, including a neurologist and primary care doctor, and has used occupational, physical and speech therapists. He also takes anti-depressants.
While he said getting diagnosed was depressing, he’s still relieved he decided to get tested.
“I felt better and relieved that I didn’t have that hanging over me,” said McGann, who has two adult children. “I was able to do things like take part in clinical trials, which I wouldn’t have done otherwise.”
McGann said he’s grateful there’s now less of a stigma associated with the disease than in the past.
“It was never talked about back when my mother had it. It used to be something families who had the condition were ashamed of,” he said.
McGann said he hopes to bring the disease into the forefront.
“Through public figures such as (late singer-songwriter) Woody Guthrie, the disease is gradually getting more attention,” he said.
McGann said he has a bright future and still has a few things left on his bucket list, such as traveling to Ireland and Hawaii — and lots more bike riding.
“Traveling definitely helps. It gives you something to look forward to,” he said.
He gets through each day by thinking positive.
“I don’t dwell on it,” he said. “I’m able to put it in the back of mind and go about my day and not feel sorry for myself. You have to have a good attitude and do the best you can — I think that’s a good lesson for anybody fighting any kind of battle.”