Intimacy and Parkinson's: A Carepartner Story
Intimacy can mean different things to different people, and may include physical, emotional, and sexual connection with another person. Intimacy is an important part of a relationship, helping to foster trust, openness, and love. While Parkinson’s disease (PD) may pose challenges to the expression of intimacy, especially that of a sexual nature, PD does not need to mean the end of one’s love life. It is important to remember that there are many ways to express intimacy. By remaining flexible and creative, people with Parkinson’s and their carepartners can experience fulfillment and joy in their relationships.
There are plenty of reasons to prioritize intimacy in any relationship, including enhanced connection, boosted mood, and improved wellbeing, but people with Parkinson’s can add a few additional reasons to that list – research conducted on men in the early stages of PD found that those who maintained a healthy sex life were less likely to experience motor difficulties and depression, and were more likely to have a higher quality of life overall (Picillo, et al., 2019).
Larry and Rebecca Gifford personally know how staying adaptable and flexible can help keep the spark alive. The couple, who will celebrate 23 years of marriage this year, says that intimacy and closeness have been a fundamental part of their relationship, even before Larry was diagnosed with Young Onset Parkinson's disease in 2017. “We know this aspect of our relationship is still very important, so we are putting in the time and energy to adapt and make it work as long as possible,” says Rebecca.
However, they admit that incorporating intimacy into their lives is complicated by several factors, such as finding time away from their 12-year-old son and busy schedules. The symptoms of Parkinson’s also mean that the window for when sexual intimacy is possible and comfortable for them is narrow. Larry lives with neuropathy, dyskinesia, balance issues, anxiety, and urinary issues. He is not alone in experiencing difficulty due to his PD – concerns around sex and intimacy are prevalent among people with PD because of factors like pain, fatigue, depression, and motor symptoms. Common sexual function challenges, such as erectile dysfunction, low sexual desire, and hypersexuality, can also contribute to sex and intimacy issues.
Larry acknowledges that Parkinson’s can create obstacles in sexual expression. Something that many people take for granted, like removing clothes with ease, or the ability to roll over and scoot to the center of the bed, can become difficult for individuals with PD. “As my symptoms progress and discomfort in my body increases, it is much less about sex and more about moments,” he says.
However, it is not just the person with Parkinson’s that may struggle with intimacy issues. “Your partner is dealing with Parkinson’s too,” says Larry. Carepartners may juggle many priorities, frequently assuming several roles in their partnerships and families. It is no surprise that being a carepartner, while often immensely rewarding, can put a damper on intimacy in a relationship. “Parkinson’s does not take a time out for you to have a conjugal visit. If you are not exhausted by PD, your partner may be,” he says. “Everyone wants to be cared for – do what you can do to care for your carepartner.”
Transitioning into a carepartner role can bring about many changes for a relationship, including a role reversal, where the carepartner takes on some or all of the tasks their partner used to do (Didyk, n.d.). This may result in the relationship dynamic becoming more dependent, which shifts additional responsibility onto the carepartner (Didyk, n.d.). Grief and loss can also present challenges to the sexual health of a partnership (Didyk, n.d.). The multiple and incremental losses associated with Parkinson’s can be a continual presence in the life of a carepartner. Carepartners may find it difficult to know their loved one is not the person they used to be, and may struggle to cope with the loss of dreams they once held for their retirement years together. As a result, carepartners experience a higher frequency of depression and anxiety, which may in turn affect their ability to experience desire. “Give yourself permission to grieve the losses, and then move forward with new ways of remaining close,” Rebecca says, noting that there can be renewed excitement and engagement in the relationship if the partners allow themselves to embrace their new normal.
Ultimately, at the heart of Rebecca and Larry’s relationship lies the importance of communication. They admit that meaningful conversations help them strengthen their bond. Because the changes and challenges Larry experiences as his PD progresses make communication more difficult, the couple has to stay mindful about how and when they talk. “This 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,” says Rebecca. “When we make or take the opportunity to have heart-to-heart, vulnerable, trusting conversations, they mean the world to us and are a crucial part of how we remain close.”
Broadening their view of what intimacy is has also been immensely helpful for the couple. Finding pleasure in simpler things, like holding hands at a park, sharing habanero dark chocolate as an after-dinner treat, or not hesitating to bring out “the good bottle of wine” just because it is Tuesday, have given them a richness and vulnerability to their relationship. “We steal moments to embrace and kiss. We connect through coy smiles, double entendre, foot rubs, listening to ‘our’ songs, laughing about the ridiculousness of life and this disease, and sharing our highs and lows of each day,” Larry says. “When we exchange looks, I can be 28 again.”
Sources
Didyk, N. (n.d.). Sex when caregiving: Navigating your changing relationship (even if there’s dementia). Better Health While Aging. https://betterhealthwhileaging.net/navigating-sex-when-caregiving-or-dementia
Picillo, M., Palladino, R., Erro, R. Colosimo, C., Marconi, R. Antonini, A. & Barone, P. (2019). The PRIAMO study: Active sexual life is associated with better motor and non-motor outcomes in men with early Parkinson's disease. European Journal of Neurology, 26(10), 1327-1333. https://doi.org/10.1111/ene.13983
This content was published in the Summer 2022 edition of our quarterly magazine, Viewpoints. The content was accurate as of this publication date.