As today is Valentine’s Day, nurturing intimate connections with loved ones seems like the natural thing to do – but for people with Parkinson’s disease (PD), this may present challenges. Some symptoms of PD may require you to make changes in the way you express yourself and show affection. That being said, with a little bit of love, patience, and flexibility, you can forge lasting bonds – as friends and/or partners. For some, intimacy may entail igniting romantic sparks; for others, it means building stronger friendships and familial relations.
In this issue of Good News, we speak to several members of the Parkinson’s community about what intimacy means to them, and how they maintain it while navigating their journeys with Parkinson’s.
The power of friendship
The Kelowna-based Good Vibrations Ladies Support Group, of which Debbie Hartley is a long-time member, is comprised of some of her closest friends. This Kelowna team, through their determination, tenacity, and gratitude for the continuing support of Parkinson Society BC (PSBC), are consistently one of the top fundraising teams for Parkinson SuperWalk. Frequently, this results in the group winning prizes to celebrate their efforts – which they generously pay forward to local charities such as the Central Okanagan Food Bank. But, the real win for the team is the intimate connections they collectively share.
“The members of our support group, given the choice, would rather not qualify to be a part of this unique club,” says Debbie. “However, we were all served the same bowl of lemons, and do our best to make it into lemonade. The recipe includes courage, empathy, reality, fear, kindness, and a whole lot of sugar to make the medicine go down.”
Sometimes, the symptoms of Parkinson’s disease can result in changes to relationships within existing social networks. This may come with adaptations to former hobbies, a lack of understanding of the disease, age, or a combination of other factors. Support groups like Debbie’s present the opportunity to connect with others going through similar experiences with authenticity and without fear of judgement. Debbie says that within her group there is “deep listening” and while the ladies share thoughts on symptom management to travel tips, “the deeper value comes from sharing our intimate stories and greatest fears as we travel this PD journey together.”
With the COVID-19 pandemic, it has been exceptionally hard to maintain connections with friends, family, and loved ones. However, it is important to prioritize intimacy in order to reduce isolation and maintain wellbeing.
“I have made many new friends and lost others over the years,” shares Debbie. “We take turns standing on each other’s shoulders.”
Parkinson Society BC would like to extend its gratitude to the Good Vibrations team in Kelowna for their ongoing support of the organization and our flagship fundraiser Parkinson SuperWalk. While this women’s group is situated in Kelowna, we encourage those affected by Parkinson’s disease to explore the variety of support groups available through the Society at www.parkinson.bc.ca/support-groups. You never know, you may just find some new best friends.
Nurturing romantic connections
Larry and Rebecca will celebrate 23 years of marriage this year. Intimacy and closeness have been an important part of their relationship even before Larry was diagnosed with Parkinson’s disease, but as his symptoms have progressed, they’ve looked for new ways to be present with one another.
For the couple, this means being “more mindful about how and when we talk about important things, share feelings, and even discuss the best and worst parts of our day. It means we have to throw out the effortless communication shorthand we’d had for most of our 20+ years and patiently (and often impatiently) relearn how to connect in this way,” says Rebecca. Finding ways to seize the moment or looking for pleasure in simpler things, like holding hands at a park or relaxing with a glass of wine, have also proven to be helpful.
After spending decades making memories and building trust, the pair are prepared to catch each other when things fall differently than planned. This includes acknowledging that symptoms of Parkinson’s such as neuropathy, dyskinesia, balance issues, anxiety, and urinary issues may narrow the window for when sexual intimacy is possible and comfortable. Rebecca and Larry also have very busy schedules and a 12-year-old son, which further reduces the time they have alone. Their “closeness and sense of intimacy remain,” adds Rebecca, “because we make other kinds of intimacy part of every day.”
Larry notes that it’s important to keep in mind carepartners/caregivers are dealing with Parkinson’s too – expressing gratitude, and doing what you can to help, will go a long way in maintaining balance and trust in the relationship. Every couple is different, as is every person’s experience with Parkinson’s disease. Find what best works for you as a couple. Above all, open communication is key to navigating intimacy with PD. It may involve “uncomfortable conversation, but these kinds of talks can bring the scary or taboo aspects of your evolving relationship out into the light where you can see it for what it is,” Rebecca says. “Give yourself permission to grieve the losses, and then move forward with new ways of remaining close.”
Parkinson Society BC would like to thank Larry and Rebecca for their candidness in completing the interview that allowed us to put this piece together for Valentine’s Day. The topic of intimacy is deeply personal. Not only were their answers so beautifully complementary of one another, causing some tears to be shed, but they provided us with an exemplary reminder that love is something to be tended to and grown.