Over the 10 years since Douglas Oulton was diagnosed with Parkinson’s disease, if there’s one thing his family has learned, it is that Parkinson’s is a family disease. It has reached into nearly every aspect of their lives.

The Oulton family (left to right): Christian, Rebecca, Douglas, Pam, Sarah, and Nathan.

When Douglas was diagnosed with Parkinson’s disease on Valentine’s day in 2000, he was 44 years old. He and his wife Pam were raising four teenagers. He worked as vice president of finance for a manufacturing company. Life was good. Then Parkinson’s disease set the family on a path they never anticipated.

Before Douglas and Pam could break the news to their children, Douglas says, “We had to break it to ourselves first and find out what we were talking about.” A few days later, they shared the diagnosis with their two sons and two daughters, letting them know that, although there was nothing to stop Parkinson’s, medication would improve it for a while. Pam says, “We’ve always been an open family, so our children were the first ones we talked to about it. We kept it quiet except for immediate family.”

Work was a different matter. Douglas didn’t want people to think he couldn’t continue to do his job, so he didn’t say anything. However, maintaining his long work hours while managing his symptoms left him so drained that he says, “I would just come home, crawl into bed, get lots of rest and head back to work the next day. It took hours out of my home life and stopped me from doing a lot of the things I enjoyed doing around the house.” This lack of interaction at home didn’t sit well with Pam who says, “It kind of pissed me off.”

Managing symptoms

Medications also caused some strife. Some medications that enabled Douglas to work from early in the morning until late at night had the side-effects of increasing his anxiety level and making him so paranoid that it was more than Pam could bear. She eventually asked Douglas’ neurologist to take him off those medications which have since been taken off the market. Dealing with the side-effects of medications, particularly dyskinesia (involuntary movement) is an ongoing concern. Douglas has also had deep brain stimulation surgery which has helped restore some of his ability to smile and laugh.

Negotiating relationship

When asked if Parkinson’s has altered their relationship, Pam says, “We’ve always had a strong relationship but Parkinson’s has definitely challenged things.”

Communication has changed. It takes longer for Douglas to participate in conversation, responding to questions or expressing what he wants to say. He is also more sensitive to comments. Pam notes, “I can’t be flippant about what I say. I have to be accurate and careful about how I word things because I find Douglas is more emotional than he was before.”

Pam has also noticed an increased vulnerability. “There are times when I’m going out with friends and Douglas will say, ‘Are you going to come back?’ I think he’s worried sometimes that I am going to leave him because of what we’re going through. It’s difficult to try to deal with that.”

Douglas, on the other hand, says that Pam sometimes tiptoes around him too much. “She should be telling me what she’s feeling but she keeps it bottled up inside. She doesn’t want to hurt my feelings because she thinks I can’t deal with it and help her out.”

Changing roles

He views the change in their relationship as a change in roles. He had to leave his job five years after his diagnosis. Pam continues to work so that she can have a benefits package to help cover the cost of medications and funds for retirement. “The shoe is on the other foot now,” says Douglas. “When Pam comes home from work, she’s trying to wind down and my day doesn’t match up to hers. I was able to weed our flower garden for the first couple of years but now I can’t do that.”

Regarding social interactions, Douglas says, “I find it difficult that I’m more on the receiving end of people’s help than I am on the giving end. People can be very neighbourly but I would rather be the person helping out other people. I’m more comfortable with that.”

Making decisions

The strength of this community support is influencing one of the couple’s decisions – where to live. Should they stay in Sackville, NB, where Douglas serves on committees, attends church and choir practice, plays basketball twice a week, gets help carrying groceries home and phone calls when he has forgotten his wallet at the store? Or should they move to Halifax, NS, where three of their children live, where Douglas’s medical team is located and where Pam would like to work? “It’s a real dilemma,” says Pam. “Do I move someplace where I know I’d have more support or do we stay here where he has the support he needs?” The decision-making isn’t helped by the unpredictability of Parkinson’s. As Pam says, “There’s no timeline. No one can tell you it’s going to progress this way or that in three years’ time.”

Staying strong

How do they manage? Douglas says, “Stubbornness,” also his community connections, and, of course his wife and children. He says, “Parkinson’s can make your relationship stronger than it was before. Whenever I get down the person who picks me up is always my wife Pam. She’s the rock that grounds me.”

Pam adds, “The worst time is when we’re both down at the same time. It doesn’t happen often. Usually one of us can say to the other person, there are people who are worse off than we are. Move on. This is what we’re dealing with.”

Growing up with a parent with Parkinson’s

For their now-adult children, having a parent with Parkinson’s has been a rich source of life lessons. Daughter Rebecca says, in the early years, they didn’t see many symptoms so they didn’t know what impact Parkinson’s would have. Her parents encouraged her and her siblings to go to university even if meant having to leave New Brunswick. “They said, we can’t live our lives looking at what may happen, we have to live it based on what we know right now.”

After getting a graduate degree and working in Alberta, Rebecca has moved back to the Maritimes partly to be closer to home and to start her own financial services firm educating families about money and advising them that, “You have to take care so if something happens down the road, your family is going to be okay.”

She believes Parkinson’s has brought her closer to the family and given her strength and clarity about what is important in life. She half-jokes that, thanks to her parents’ example, she may have set the bar too high in relationships. “I see how Mom and Dad have stuck it out when so many families don’t. It has been hard for me to find someone with that same ethic of working things through, good and bad.”

Youngest son Nathan lives at home while finishing his university studies in biology and physics. When studying diseases, he has been able to put a face on some of the things his classmates read about in their textbooks. He is also the child who sees firsthand the disease progression in his dad – the problems with balance and short-term memory, the changed mannerisms and verbal expression. He says, “For me, the hard part is the unpredictability. Dad could be having one of his best days and by the end of the day it could turn into one of his worst. We just have to jump in with both feet and take each day as a new day.”

As he prepares to find his own way in the world, Nathan is philosophical about what it means to have a parent with Parkinson’s. “I’ve learned that you should cherish the good as long as you can because it does get harder as it goes along but if you have an ability to talk about it and have a sense of humour, that helps. It’s not something you can change so why not look at it in an optimistic way? Whatever is going to come is going to come so enjoy what you have while you have it.”