Dan Keller (00:00)
Welcome to this episode of Substantial Matters: Life and Science of Parkinson’s. I’m your host, Dan Keller. At the Parkinson’s Foundation, we want all people with Parkinson’s and their families to get the care and support they need. Better care starts with better research and leads to better lives.
In this podcast series, we highlight the fruits of that research — the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.
Dan Keller (00:41)
People with young-onset Parkinson’s disease face special challenges at work, home, and in the family, and they may have responsibilities that older people do not. While the average age of diagnosis for Parkinson’s is around 62, in practice, any diagnosis occurring before age 50 is considered young onset.
At this age, career and family responsibilities may leave you less time to engage in your own care compared to people who are retired or with grown children. But the good news is that younger people are often in better health in general, so you can experiment with different types of exercise to find what you most enjoy. Exercise is not only a stress reliever — there is promising evidence that it may modify the Parkinson’s disease process, and younger brains may respond to it especially well.
Elaine Book, a social worker and the Parkinson’s Foundation Center of Excellence coordinator at the Pacific Parkinson’s Research Center in Vancouver, British Columbia, works with people with young-onset Parkinson’s. While no two people or situations are exactly alike, she describes certain similarities and offers strategies to help you approach the unique challenges of receiving a Parkinson’s diagnosis early in life.
Elaine Book (02:07)
With the young-onset population, my experience has been that while their needs definitely vary, I would say there are some common themes with the people who I work with. Certainly work is often a concern for them, their relationships with their family, and coping in general with regards to having a diagnosis like this — an ongoing, progressive condition.
Dan Keller (02:37)
Why don’t we first focus on some of the work issues. What are the issues, and what do people do about them?
Elaine Book (02:45)
There are two significant issues with regards to work. One is around disclosure of the diagnosis, and the other is how long to continue working for. You know, when to disclose is a very individualized decision. For many, many don’t want to disclose for fear of losing their job or being looked at in a way such that they’re not as capable as they were before. So sometimes people are very reluctant to disclose the diagnosis.
But what I try to suggest to them is that they have to recognize that, more often than not, their coworkers, if they work closely with others, are picking up on subtle changes, and that they may actually be thinking that there’s something far more serious or more stigmatizing than Parkinson’s going on. So I often advise that it is valuable to consider disclosing, because it can explain a masked face, it can explain a behavior, and those are valuable things for your coworkers to know.
Dan Keller (03:49)
What sort of things do they face in terms of relationships?
Elaine Book (03:53)
So Parkinson’s disease is a family affair. It doesn’t affect just the individual, but it impacts their partner or their spouse. It impacts their children. It impacts their extended family.
Dan Keller (04:07)
What are some of the specifics — their extended family, children, spouse? Each one of those must have its own intricacies.
Elaine Book (04:15)
Absolutely. So, you know, certainly with the spouse, intimacy is something that’s brought up a lot for a variety of reasons. With a condition like Parkinson’s disease, if the person with Parkinson’s has mobility issues, or depression, or apathy, fatigue — all of those kinds of things really interfere with intimacy. And likewise, for the partner, fatigue and depression can also play a part.
So I really do try to talk with couples about the importance of communication, keeping those lines of open and honest conversation going, and talk to them about ways that they can maintain the relationship that they’ve had.
Dan Keller (05:00)
And extended family and kids?
Elaine Book (05:03)
We could spend a couple of hours on the kids. But in short, most parents do try to, for lack of a better word, shelter their kids from the condition, which is a pretty hard thing to do as it continues to progress. Some people don’t even want to tell their kids that they have the diagnosis.
Again, I’m a believer in open communication and how important it is to be open and honest with the kids, because again, they’re going to pick up on subtle changes — medication sitting on a counter, slowness in using an iPhone — those kinds of things that the person with Parkinson’s doesn’t realize they’re picking up on.
And kids are going to go to Google, and they’re going to find all sorts of things that are, again, far worse than Parkinson’s disease. So it’s about helping them adjust to changes that are going to happen in the family as a result of having Parkinson’s disease, and supporting the kids in learning about it, coping with it, and moving forward.
And with respect to extended family, similarly, you know, not a lot of people know that much about Parkinson’s. What they do know may not be accurate. And so with your extended family, you really want to be able to tell them what it is that you need. Some people don’t know how to ask how to be helpful. And so again, it’s about good communication with the people who are in your immediate support network.
Dan Keller (06:29)
For the kids, are there certain limitations that parents with Parkinson’s can’t do that most parents do? Do the kids come to resent that, or how do they deal with “Dad can’t do this with me”?
Elaine Book (06:43)
That’s an excellent question. And there’s so much variability in Parkinson’s disease, and so again, there’s that much variability in the way that it impacts a family or impacts kids.
You know, if there’s another partner who can pick up the slack, it’s about talking about it right from the beginning and talking about ways that you can still maintain the activities that you shared together, and focusing on what you can do as opposed to what you can’t do.
You know, I think the big thing with kids is that if they’re showing signs of maladaptive behavior, we can’t always assume that it’s because of Parkinson’s in the family. There’s a lot of age-and-stage stuff that kids are going through that may have nothing to do with Parkinson’s. And again, all the more reason why having conversations, having family meetings, and keeping them in the loop is important.
Dan Keller (07:35)
What are some coping strategies that people with young-onset Parkinson’s have found, or that they can be taught to use?
Elaine Book (07:44)
We kind of divide coping into three different types of strategies that people use. One is task-oriented strategies, where they really look at the situation, analyze it, and take action. Another is emotion-oriented strategies, where you look at the feelings and how this experience is making you feel and find support for that. And then the other is distraction-oriented, where you look for activities that take your mind off the situation.
A lot of young-onset individuals exercise a lot. And not only is that good for Parkinson’s, but it’s good for managing stress and coping, and it actually hits all three of those categories. So if I had to answer your question, the most used coping strategy would be exercise — including yoga, meditation, and other activities.
Dan Keller (08:42)
What have we missed, or what else is important to add?
Elaine Book (08:45)
I think there are a lot of great resources out there. So I think the biggest thing is that if somebody with young-onset Parkinson’s is feeling that they’re struggling in any way, asking for help is not a sign of weakness — it’s a sign of strength.
There are social workers, nurses, and the Parkinson’s Foundation helpline that can refer people to resources closer to home. There are also a tremendous number of online resources available — chat groups and forums — especially helpful for younger people who are still working and may not be able to attend daytime support groups.
So I think the biggest thing is to tap into resources, don’t be afraid, and remember that knowledge is powerful. A positive attitude is probably one of the most important things someone can try to embrace.
Dan Keller (09:40)
Very good. Thanks.
Dan Keller (09:51)
As Elaine Book said, openness and discussion often help people with young-onset Parkinson’s deal with work, family, and social situations, and resources are readily available in person and online. You can always turn to the Parkinson’s Foundation helpline for information and referrals.
For more on the benefits of exercise for people with Parkinson’s, listen to Episode 3 of this podcast series.
If you have any questions about the topics discussed today, or if you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback.
Dan Keller (10:31)
We’ll respond to some questions in future episodes. At the Parkinson’s Foundation, our mission is to help every person diagnosed with Parkinson’s live the best possible life today. To that end, we’ll be bringing you a new episode in this podcast series twice a month.
Dan Keller (10:54)
Until then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO — that’s 1-800-473-4636.
Dan Keller (11:06)
Thank you for listening.
