Fostering Relationships in Your Life
Chronic illnesses like Parkinson’s affect people with the disease and those who care about them: parents, siblings, partners, children, friends and co-workers. Recognizing that Parkinson’s disease can stress relationships in unexpected ways and being willing to discuss noticeable relationship changes with one another can allow relationships to become stronger and more supportive.
APDA created an educational series called Unlocking Strength Within, exploring important emotional and psychological aspects of living with Parkinson’s disease (PD), including navigating relationships, understanding and managing depression, coping with apathy, and more. Follow the link below to watch the episode on relationships.
WATCH: Navigating Relationships with PD
Spouses & Partners
For many couples, maintaining intimacy throughout their relationship requires open lines of communication and engagement. When one member of a couple has Parkinson’s disease (PD), there are additional hurdles with unanticipated changes in the couple’s physical, emotional, and sexual interactions. Through broadening their view of intimacy and utilizing health care professionals, couples can maintain and even improve their intimate connection, even while living with PD.
How Parkinson’s can affect intimacy and sexuality
The changes brought about by PD can affect a couple’s relationship, and it is important to understand the scope of those changes in order to maintain your connection as a couple while living with PD.
The motor symptoms of PD—slowed movements, tremor, and stiffness—can interfere with lovemaking, and reduced facial expression can make nonverbal communication difficult. Men may have difficulty achieving or maintaining an erection, or achieving orgasm, while women may have vaginal dryness or pain, and orgasm may be difficult as well. Some PD medications may cause hypersexuality, which can lead to an imbalance in sexual desire between the couple. Alternatively, some medications used in the treatment of PD may lead to hyposexuality and reduced desire.
Beyond these physical effects, when one partner takes on the role of care partner, it can affect the ability of both partners to retain their sexual desire. One or both partners may be more tired, and may experience depression or grief as a result of the illness or contemplating an altered future. All of these increase the difficulty of keeping alive an open, intimate sexual relationship.
Learn more about the sexual effects of Parkinson’s
Guidance for navigating relationships while living with Parkinson’s
Communication is the key to a fulfilling intimate relationship
Good communication is the most important skill for any relationship, and even more so when living with PD. Many couples often have never needed to develop the skill of talking openly about their sexual relationship and their needs for emotional intimacy. Through developing this skill, couples will be better able to adapt to the changes PD brings, and other changes that happen sexually as we age. Sharing feelings, worries, and requests with your partner—being willing to be vulnerable, and being open to and supportive of your partner’s vulnerability—increases closeness, and makes it clear that you are committed to one another.
Key parts of successful communication with your partner include:
- Being positive: Rather than only telling your partner you are unhappy with your level of physical connection, try telling him or her, “Let’s talk about ways we can be more physically close.”
- Offer ideas, rather than blame or criticism, perhaps saying, “Can we try this?”
- Be brave! Embrace talking about the difficult topics; your partner will probably be grateful you brought them up, even if he or she is uncomfortable at first.
- Seek help from a professional if you need it.
Discussing the changes and challenges brought on by Parkinson’s can help mitigate misunderstandings and foster a supportive environment. It’s important for all involved to express their feelings and concerns openly.
ParkinSex: A Guide to Intimacy
Need help with intimacy? APDA’s ParkinSex initiative was designed to empower those who have allowed intimacy to fade and inspire those who are looking for new ideas.
Read the eBook, watch the video, and get your ParkinSex kit delivered to your home.
Talking with your doctor
Talk to your doctor about your sexual concerns. Your doctor may not bring up sexuality, but is likely to be able to offer you help in coping with PD-related challenges. You might try asking your doctor, “Can I talk to you about the changes in our sexual life, or my sexual experience?” or “What are the sexual side effects of the medications I am on?” Medications for Parkinson’s disease may affect sexuality, and some may cause hypersexuality; adjusting medications can often help. You may be experiencing depression, which reduces sexual desire. Depression should be treated for many reasons, including its effect on libido.
Finding a Therapist
A sex therapist or sexologist is trained in helping couples improve their sexual and intimate relationships. If there are no professionals in your area, use of technology such as Skype or FaceTime may allow you to meet with someone in the comfort of your home. For more information, you can visit the American Association of Sexuality Educators, Counselors and Therapists.
Friends & Family
Human interaction is one of the essential components of well-being
It is not unusual for people with Parkinson’s disease to begin limiting their personal or professional activities in order to hide symptoms like tremor and slurred or slow speech from family, friends and co-workers. It may seem easier to avoid people than to explain symptoms you have not yet managed to accept yourself.
Another reason some people withdraw is the apathy and depression which often accompany Parkinson’s disease. Even those who have always been more extroverted may find that they no longer have the interest or motivation to stay connected with others or pursue new relationships.
Even when you do not feel like it, socializing is important and can improve your quality of life with PD immensely. Some people find it more important to remain engaged with the friends they had prior to diagnosis, others distance themselves from those relationships and become involved in the PD community or successfully do both. Focus on whichever feels most right for you. The goal is to have some type of regular interaction with people, other than family members, who can provide support.
Parenting and PD
Parenting is one of life’s greatest challenges even without a chronic illness. Throwing Parkinson’s disease (PD) into the mix can add many hurdles and can introduce a seemingly endless set of questions: Should I tell my children about my PD? How do I tell them? When do I tell them? What do I tell them? How might they react? We have some resources that may help you navigate life with:
- PD and Teenagers: including suggestions on how to communicate the diagnosis, prepare for potential reactions, and ultimately remain an active, involved parent.
- PD and Young Children Booklet: Often parents wish to protect young children from the distressing occurrences in life. However, even young children can tell when something is different or “wrong” with someone they love. This booklet can help you navigate this.
- General Parenting with Parkinson’s Advice: In this blog, four people with PD — Harry, Rick, Bob and Cathy, as well as Bob’s care partner, Charles (all names have been changed) discuss the challenges of parenting with PD.
Dr. Gilbert Hosts: Parenting & Parkinson’s
Helena and her adult son Alex, Hiro and his teenage daughter Hanna, and John–who is the father of two toddlers–have a range of experiences with PD and relationships. They share their insights, stories, and expertise.
Get the Help You Need Maintaining Relationships
Seeking Support and Resources
Reaching out for support from the wider Parkinson’s community can offer guidance and reassurance. APDA has a number of resources for a support network. For instance, APDA Chapters are a resource for people with PD offering outstanding patient services and educational programs to the local PD community. Our Chapters work hard to elevate public awareness about the disease and raise much-needed funds through Optimism Walks, galas, and more.