For better or worse
Fenwick couple learns to live with Parkinson’s disease
AMHERST, N.S. – To have and to hold from this day forward, for better, for worse, for richer, for poorer, in sickness and in health…
“We were married in 1985 and have been married for 34 years,” Jeanette Hay Connelly said. “We married when I was 20. It seems a lifetime ago.”
Hay Connelly’s marriage to her husband Michael Connelly, now 57, took an abrupt turn 14 years ago when, at the age of 43, he was diagnosed with young-onset Parkinson’s disease.
In her recently published book, "A Life Touched by Young Onset Parkinson’s Disease," Hay Connelly writes about that abrupt turn and the ups and downs that followed.
“The divorce rate among people with chronic-illness is quite high. It puts stress on a marriage,” Hay Connelly said.
Jeannette and Michael recently moved from Truro to Fenwick and are currently building a home in Little Forks.
“We moved up here to be closer to family. Michael’s sister lives here.”
Michael was in the military when he was diagnosed with Parkinson’s disease.
“Mike’s ship was scheduled to go to the Middle East,” Hay Connelly said. “And he was sent to see a neurologist that was a consultant with the Canadian Armed Forces, so we got in really rapidly.”
The need to see a neurologist became apparent a couple of weeks after Michael had back surgery.
“After the surgery, I noticed that when he was walking his right arm didn’t swing, his finger and his thumb came together, and his baby finger was twitching,” Hay Connelly said.
They thought the symptoms were side effects from the back surgery but when they talked to the neurologist he said it could be one of three things; a stroke, a brain tumour, or young-onset Parkinson’s disease.
“I’m a registered nurse, so I knew there was something wrong but I hoped it was a stroke because I thought that whatever damage was done could be rehabbed,” Hay Connelly said. “Parkinson’s is a chronic neurological degenerative disease, which means it gets worse with time.”
Before he was deployed to the Middle East, Michael was sent for an MRI.
“The neurologist confirmed it was young-onset Parkinson’s disease,” Hay Connelly said.
Because of the medication he had to take, Connelly couldn’t deploy.
“Mike spent 25 years in the military and had to retire because he wasn’t fit for sea with the medications he had to take,” Hay Connelly said. “That kind of broke his heart because he loved the military.”
Afterwards, he took a job at Caterpillar but, despite his best efforts, was unable to continue at that job.
When he was diagnosed, the doctor told them he could manage the disease for seven years, and it was almost seven years to the day that it began to get worse.
“It was almost like somebody had thrown a switch,” Hay Connelly said. “The tremors got so bad that he couldn’t keep it to himself.”
He developed mobility issues and became prone to falling.
“It got to the point where Michael was also having problems swallowing and I was cutting his food and, also, helping him get dressed,” Hay Connelly said.
It impacted their social lives as well.
“Because of the tremors we couldn’t go out to eat, and it makes his muscles rigid so he can’t sit for long periods of times, so going to the movies or a show, he couldn’t do it anymore.”
Six years ago he had a deep brain stimulation device implanted in his brain.
It took away the tremors.
“So when you meet him now he doesn’t shake. There are no tremors,” Hay Connelly said. “But it affects his speech. Sometimes you can barely hear what he says.” Mobility issues remain as well. They now have a service dog, an 80-pound German shepherd named Shadow, who helps Michael with his mobility.
“She’s so silly sometimes that it brings a smile to his face.”
For the first few years after the diagnosis, Hay Connelly never spoke about Michael’s disease.
“We didn’t tell anyone. The few times I told people, they were so sorry and upset that it made me tearful.”
She says not talking about it was her biggest mistake.
“I think we probably could have gotten support from friends and other people had I not kept everything to ourselves. I think it made it more difficult than it needed to be,” Hay Connelly said. “When someone offers help, I’ve learned to accept it and not always say ‘I’m good.’”
She has also learned the importance of staying positive.
“I try to do something kind for him each day to focus on the positive things we have because there’s always somebody in a worse situation ...”
She hopes the book can help others going through similar struggles, adding that it’s important to not get in a rut.
“Do something for someone else or try to do things in your life where you focus on each other in the relationship,” Hay Connelly said. “At the end of the day Mike has Parkinson’s but he’s the same person I married.”
"A Life Touched by Young Onset Parkinson’s Disease" costs $20 and is available at Coles Bookstore in Amherst and at Maritime Mosaic in Dayle’s Grand Market.