Diagnosis of a chronic condition such as Parkinson’s disease has a significant effect on the relationship between spouses (and nonmarried life partners) in numerous ways. It presents challenges for the partner with Parkinson’s as well as the partner who will become caregiver. Meeting these challenges with honesty, compassion, and a spirit of collaboration is important.
For many couples, the diagnosis of Parkinson’s has little effect on daily living at first or may even improve it as finally there is an explanation for the symptoms the person has been experiencing and the anti-parkinson’s medications are now keeping those symptoms in check. Work, social activities, family functions, and recreational interests go on as usual. This state can lull partners into believing there is no reason to discuss the possibilities of an uncertain future, as nothing looks especially different. Yet such communication is critical from the onset. It establishes a pattern of open dialogue and sharing that becomes the foundation for the more difficult challenges that lie ahead. As important as it is to continue a normal life, it is essential to prepare for the changes that are part of the overall picture of Parkinson’s.
Whichever partner has Parkinson’s, the roles of both partners gradually shift. The partner with Parkinson’s becomes less able to manage physical tasks, so the caregiver partner takes those over. A key challenge for both partners often is determining when it is time to transition responsibilities. The unpredictable course and daily variations of Parkinson’s make it difficult to know when a function, such as driving or paying the bills, is no longer possible. Partners who begin the Parkinson’s journey in collaboration are better able to manage these challenges and changes than those who forge ahead with the presumption that when the time comes to express their needs, they will communicate. Unfortunately, the cognitive and physical abilities necessary for such communication are sometimes casualties of Parkinson’s.
Most couples sometimes feel intense frustration about the unfairness of the changes Parkinson’s forces on the intimacy of their relationships. Just as the neurologic degeneration of Parkinson’s affects walking and fine motor skills, it also often affects physical intimacy. Actions once nearly automatic, such as holding hands and hugging, can become slow and clumsy. The same neurodegeneration that slows intestinal function can cause erectile dysfunction in a man, impeding the flow of nerve signals and muscle response that permit an erection. The medication sildenafil (Viagra) often is effective in restoring sexual function and does not interact with anti-parkinson’s medications (however, men who are taking nitrate medications for heart disease cannot use sildenafil).
Patience and humor are important for both partners as they learn how to accommodate these deteriorations and still have a loving, intimate relationship. Most couples who have had satisfying sexual relationships before Parkinson’s do not lose desire for each other because of the Parkinson’s but may feel uncomfortable or confused about how to express that desire within the constraints that Parkinson’s imposes. With open, honest communication and planning, most couples can remain sexually intimate for as long as both partners enjoy the relationship.
Additional challenges can surface when the caregiving partner also has, or develops, health problems, as is more likely to occur among older couples. These problems may require particularly careful planning to meet the caregiving and financial needs for both partners.