It’s been 17 years since Greg McGinnis got the life-changing news that he had early onset Parkinson’s disease.
McGinnis, who was only 39 at the time, had been off work with severe depression.
The diagnosis, said the now 55-year-old Barrie resident, left him in a pretty dark place at the time, but now, thanks to the support of not only his family, but also Parkinson Canada, he has found a way to live with the disease.
McGinnis said it was his psychiatrist who had noticed his arms didn’t move when he walked and that he had a tremor in his right hand. She suggested going to the doctors to get a referral to a neurologist.
The neurologists put him through a battery of tests and told McGinnis and his wife his findings would be sent to his family doctor.
“We both had a question, so we went back to ask. He was in the process of dictating a letter to my doctor and he was saying he had a gentleman with early onset Parkinson’s," McGinnis told BarrieToday. "So that’s how we found out my diagnosis. It was absolutely crushing. It destroyed me."
McGinnis said both he and his wife broke down in their car.
“We didn’t know much about it," he said. "We knew the term, but didn’t really know what it was. My grandmother and my granny on my father’s side both had Parkinson's, but we were always told it was a disease of the elderly.”
McGinnis isolated himself from friends and family for fear they would look at him differently. Wrapping his head around his new reality took him the better part of two years.
“That was a very difficult time because I was 39, I was working for a major retailer, I was second-level IT. … My career was only going up… and this took me out of my career. I had to stop working because with the shaking and being in a car on the highway with trucks going by sent my anxiety through the ceiling,” he said.
“It took me from a very well-paying job to being on LTD (long-term disability) and CPP (Canada Pension Plan). If I wasn’t married, I would be below the poverty line. I would have to decide what medications I’d get or if I would pay bills. To me that’s totally unacceptable, but that’s the way it is.”
Learning to live
As a family, McGinnis said they had to develop a variety of ways to deal with their day-to-day lives.
“My wife and I have had to do different work-arounds with this disease, because it doesn’t just affect me, it affects my family when they see me having problems walking or talking or eating," he said. "There is such a different capacity of stuff happening that nobody sees (and) if they do see it, sometimes they wonder if your mind is there.
"I know at times I don’t sound as though I know what I am doing. I do know what I am doing, but my body won’t allow me to do it.”
His wife began to attend Parkinson’s Chapter caregiver meetings in Barrie and eventually managed to convince him to go for support as well.
The first time he attended a Parkinson’s support group, McGinnis said he was still very angry and upset.
“I walked into this meeting full of rage and I looked around and saw a variety of different ages and stages of the disease," he said. "Everybody was doing somewhat of what they wanted to do. I felt bad about it later, but I unloaded asking about research, what was being done. … At this point 17 years ago, there was no cause or cure … (but) I ended up staying, which helped.”
McGinnis said they were also forced to sell their two-storey home when he started to fall down the stairs and move to a bungalow.
“There’s a part of the disease where you either can’t walk or you can’t stop walking. When you can’t walk, it’s called sticky feet. You literally can’t pick your feet up,” he said.
He would have to get his son to hit him in the back of the knees so to drop his weight forward and give him the momentum to start walking.
“The other is when you can’t stop walking," McGinnis said. "I was literally falling down our stairs, so for safety reasons we sold our house."
McGinnis said his son always enjoyed giving his old man a quick smack, thinking it was pretty funny. Maintaining positivity, while challenging, is key to living with a disease like Parkinson’s, he acknowledged.
“We’ve always tried to put some levity into it because you can only cry about it so long.”
One memory he shared was from when his son was five.
“I was pouring him some milk and he said, ‘Dad, you’re making me a milkshake.' We just stopped and chuckled,” said McGinnis.
Fifteen years later, he used that memory as one of his fundraising campaign slogans — 'Show us your shake' — where he challenged people to make different flavoured shakes or protein shakes and make a donation to the Parkinson Society to help with finding a cause and cure for the disease.
Along with the telltale shake, Parkinson's also comes with a myriad of other issues.
“People will see the shaking and think it’s not a big deal. If they could step inside of me and feel what it feels they’d understand there is a lot more going on here than just hand shaking. There are a whole bunch of other psychological parts that come along with this disease.”
Good support will keep you going
Care Management and having a good support system is huge, he said, crediting his family for keeping him going.
“Parkinson's will either rip your family apart or bring it closer together. It’s done both for me,” he said.
McGinnis said he hasn’t seen some of his family members for 17 years as they couldn’t handle his disease.
“My wife’s side of the family has picked up that slack and said whatever we need they will help with. I used to go down to Toronto for appointments and either one of my brothers-in-law would take the day off and take me. That kind of support is what keeps you going," he said.
Another aspect of care management that has been a game-changer for McGinnis is having devices like the Spencer In-home Medication Dispenser, which helps him manage his daily pill intake.
“I need to have my medication every three hours to stay somewhat stable,” he said, adding he got the device about a year-and-a-half ago.
“When we didn’t have it, because Parkinson’s also affects the memory, I would forget to take my medication. I went at least six months without taking my medication on time,” he admitted. “Now with the dispenser my wife doesn’t go to work worrying about if I will remember to take my medication or not.”
Always maintain hope
The most important thing about living with the disease, said McGinnis, is to always maintain hope.
“If you don’t have hope, you don’t have anything to grasp on to. I’ve said all along, I know there won’t be a cure in my lifetime (but) I am hoping there will be a cure in my son’s lifetime. You have to have hope that at some point this is going to get better,” he said.
“You have to surround yourself with hope. … I’ve got family, I’ve got a house, food on the table. … I’ve still got it pretty good, I am not in the hospital or strapped down to anything. I look at what I do have rather than what I don’t have.”