Being in an intimate relationship is very important to me, and I am currently in an intimate relationship. I have become more aware of my need for intimacy as this has become an issue in our relationship. I am experiencing physical barriers to a satisfying intimate relationship. When I am ‘off’ I find it difficult to mentally get in the right frame of mind. Shaking/Bradykinesia/Dyskinesia is very distracting and a great mood killer. Though it hasn’t been stated, I am sure it has the same effect on my partner. I am experiencing emotional barriers to a satisfying intimate relationship. My partner has withdrawn from any intimate contact.
Whilst she say ‘its me, not you’ I am convinced that it a lack of attraction that has resulted in this situation. Emotionally I find this very hard to deal with and worry about the long-term impact this will have on our relationship and our family. I have undertaken treatments that have impacted positively or negatively on my relationship, for example medications or procedures such as Deep Brain Stimulation (DBS). Medication helped with all aspects of Parkinson’s Disease for the first 5-6yrs. Its efficacy has decreased however in the last couple of years. The factors impacting on my ability to have an intimate relationship include tremor, rigidity, slowness of movement, difficulty with coordinating movement and a negative body image.
Strategies that have been useful or may be useful include scheduling sexual activity for when medication is working and increasing exercise to improve mobility and stamina. I feel that 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, but it’s not at the top of my list. I would like like a Relationship Therapist to know about young onset Parkinson’s, just the basics of physical symptoms, impacts and treatments. I would think young onset Parkinson’s and its impacts on both parties must be analogous to other conditions? Regarding questions we should be asking children – What they know, how much they think its helpful to know. What their biggest concerns are. How they think it impacts their lives. Do they worry about the future? Do they worry they might inherit the disease? I think this is a great initiative that could be a big help to people with young onset Parkinson’s Disease.
