Being in an intimate relationship was once very important to me. Post diagnosis and increased symptoms it has fallen down the priority list. I am currently in an intimate relationship, and I feel differently about intimacy than before I was diagnosed. I feel more like a dependent than an intimate partner. The symptoms of PD are in no way attractive or appealing and I am conscious of this. I am experiencing physical barriers and emotional barriers to a satisfying intimate relationship. I have not undertaken any treatments that have impacted positively or negatively on my relationship, for example medications or procedures such as Deep Brain Stimulation (DBS).
The factors impacting on my ability to have an intimate relationship include lack of emotional support, reluctance to ask for help, fatigue, lack of sleep, depression, stress, guilt, a feeling of being overwhelmed, the impact of changes in independence, the impact of changes in partner roles, parenting concerns, concern for my employment security, worry about the future, financial concerns, legal concerns, rigidity, slowness of movement, difficulty with coordinating movement, self-esteem issues and negative body image. I have experienced a lack of sexual desire, changes in sexual function, feelings of reduced relationship intimacy and balance issues during sex. Strategies that are useful or may be useful include focusing more on casual intimacy like kissing and touching. I feel it would be useful for the App to provide free access to a Relationship Therapist for online advice specifically in relation to young onset Parkinson’s. I would like a Relationship Therapist to know about young onset Parkinson’s, and at many times throughout the day as a PD sufferer you feel like a passenger in your own body, as you are not always in control of your own movements and to some degree thoughts. It’s difficult to come to the realisation that your contribution to a relationship is so damaged by PD. With regards to questions to ask children, what resources could be made available that would make my parents be better parents? How has PD affected your life as a child of a sufferer? Additional information – It is a very difficult (but real) fact to digest and live with, that PD has put my family in a place where in most aspects they would be better off without me.
