LAKE TWP. Bob Reolfi had to make lifestyle changes over the past seven years. He is still making them.
"Everyday is a little different for me," he said.
He is among the many living with Parkinson's disease. There is no cure for the neurodegenerative brain disorder, but there are treatment options.
It can start with a tremor, forgetfulness, even a slowing of movement. It is progressive, meaning it only gets worse.
"It isn't easy to live with this disease," said Reolfi, who sells computer software for school cafeterias. "It was surreal at first. I was diagnosed about five years ago, but I've known for about seven years. I had cognizance issues. That is how it started. I lost my sense of smell. I couldn't remember anything."
He knew something was wrong, but it wasn't until he started to shake that he saw a doctor.
After waiting for months for an appointment, he changed doctors and became a patient of Dr. Camilla Kilbane, a Parkinson's disease and movement disorders specialist and assistant professor at University Hospitals Neurological Institute.
When his movement became disabling for him last year, he decided to have deep brain stimulation (DBS) surgery. It is primarily for patients with tremors and dyskinesia issues, involuntary movements that come in response to repeated debilitating movements. He had the surgery June 26 at University Hospitals.
"Basically, they put two holes in your head and put two probes down in your brain," Reolfi said. "What it does is helps with tremors and balance and dyskinesia."
Because of his disease, Reolfi always walks on the left side of his wife, Joyce, because, "I tend to lean to the right. It is not me, it is my body."
Before his surgery, he said, "I literally could not write anymore, I could not use the mouse on my computer anymore, I couldn't eat with a fork anymore. Everywhere I went to eat I had to ask for a spoon and even that was iffy."
In addition, he had trouble speaking.
"Anything to do with movement was bad because the shaking was so bad," Reolfi said. "If I was really anxious, my whole body went. I remember getting really upset with someone and they had to get her (Joyce) because I could not stop shaking. My arms were flailing and my whole body just could not stop."
He said his sleep is erratic.
"It was really, really bad I couldn't sleep at all until we got some of my drugs worked out and DBS helped a little," he said. "I dream very vividly and I act out my dreams."
Dreams become nightmares
So vividly, his wife eventually had to go to another bedroom for her own safety.
"There have been issues that I have watched him struggle with," she said. "I don't want to overstep the boundaries and do what he needs to do to feel comfortable. I don't want to take over for him because I love him and I want him to be able to handle it and not feel like he has to depend on someone else to do things for him. I want him to keep his independence."
The hardest part is the dreams, they said. Parkinson's has been affecting that part of his brain.
"When I am dreaming, if I am running, my legs are actually moving," he said, noting that he was actually kicking his wife. He said that when normal people dream, they don't actually move their body parts. He does. "My muscles stay active so I act out everything I am dreaming."
"No two people with Parkinson's have the same symptoms," said Joyce Reolfi, a swim instructor at the North Canton YMCA. "He acts out his dreams. Sometimes I could catch his hands when they were coming at me. But, one time I couldn't catch it and his thumb went through my eye."
It is a tragic memory that still brings him to tears even though he was powerless to prevent it. She had several eye surgeries but doctors could not save her retina. As a result, she is blind in that eye.
"This is something we want to make people aware of if they do live with someone with Parkinson's," she said.
"I was so devastated when this happened," he said.
He is still acting out his dreams, but he does sleep better since his DBS surgery this summer.
These days, he wakes up around 7 a.m., gets ready for work and takes his medication four times a day. His memory is not always on target, but it is better. He either works from home, or he is on the road meeting with school districts.
"When I met with them before the surgery, my hands would be all over the place," he said. "One superintendent asked me if he should call 9-1-1 so I told him what was happening. I do tell them about my Parkinson's now."
The surgery has helped him, but he still has compulsive issues. For him, it is sweets.
"When I am driving down the road, I would stop at a doughnut shop and eat three doughnuts. I would buy candy at the gas station," he said. "I still have compulsions, but not as bad as before. I have to watch."
Because of his own issues, Reolfi started a Parkinson's Awareness organization this year, the Parkinson's Awareness Group of North Eastohio, to help others understand what is happening to them and help clear any confusion they may have.
The goal of the organization is to bring awareness to those affected by the disease, the new deep brain stimulation program, and treatments available.
"We are committed to helping the community understand Parkinson's by increasing awareness and educating them about the treatment options available to them," said Reolfi, noting that the group had its first fundraiser in October with proceeds going to Parkinson's disease treatment and research at University Hospitals.
Reach Denise at 330-580-8321 or firstname.lastname@example.org; On Twitter: dsauttersREP