Being in an intimate relationship is not important for me for the immediate future, but long term it’s very important. I am not currently in an intimate relationship, and I do feel there are barriers to me dating including: Disclosure – when do I bring the topic up? Quality of future life prospects – why would anyone go into a relationship knowing the long-term difficulties/outcome? Self esteem and confidence – why would anyone want me now? I know I am more than a diagnosis or a disease, but how is anyone going to see past that to see me? I feel differently about intimacy than before I was diagnosed. I was in a long-term relationship when diagnosed at 38 years of age. 5 years after diagnosis that relationship dissolved.
Emotional intimacy has become far more important than physical intimacy to me, and it became glaringly obvious that it was lacking in my relationship.
My ex became angry and resentful that his quality of future life was diminished. My diagnosis became all about him and I became the person to blame for anything and everything that went wrong. So yes, I feel very differently about intimacy now than when I was diagnosed. I am experiencing physical barriers to a satisfying intimate relationship including the current lack of one! Seriously though, stiffness, reduced control of one side of the body, shoulder pain, fatigue, occasional incontinence all impact negatively on confidence, and add anxiety about perceived performance. I think facial expressions or lack there of can be a hindrance. I am experiencing emotional barriers to a satisfying intimate relationship including self esteem, confidence and trust. I have undertaken counselling for myself – positive. The factors impacting on my ability to have an intimate relationship include a lack of emotional support, reluctance to ask for help, fatigue, lack of sleep, depression, anger, stress, guilt, a feeling of being overwhelmed, concern for my employment security, worry about the future, financial concerns, tremor, rigidity, slowness of movement, difficulty with coordinating movement, self-esteem issues and a negative body image.
I have experienced 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, talking to my partner about my concerns, increasing exercise to improve mobility and stamina, taking prescription medication specifically for sexual dysfunction, sex therapy, Hormone Replacement Therapy, counselling and pelvic floor exercises. 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 the loss of your future self. What you thought your future held in store is removed from you. You know you will never improve, only ever get worse. You see the downfall of yourself and the burden you will become on those you love. You start to unlove yourself – when that happens, it’s hard to ask another person to love you. Regarding questions we should be asking children – What do they know about Parkinson’s Disease? What do they want to know? Do they understand that just because Mum/Dad has Parkinson’s Disease doesn’t mean they will get it? Does it scare them? Mum/Dad are supposed to be strong/the helper, not needing help. Ways they can help. Ways they can ask for help/that it’s ok for them to ask for help.
