Being in an intimate relationship is extremely important to me, non-negotiable. I am currently in an intimate relationship, and I feel differently about intimacy than before I was diagnosed. I am not experiencing any physical barriers to a satisfying intimate relationship. With regards to experiencing any emotional barriers to a satisfying intimate relationship, on few occasions in the early stage of diagnosis. I have undertaken treatments that have impacted positively or negatively on my relationship, for example medications or procedures such as Deep Brain Stimulation (DBS). Sometimes medication appears to have made an impact on my emotions being manic.
Deep Brain Stimulation has been for greater effect on all aspects in my life. The factors impacting on my ability to have an intimate relationship include fatigue, the impact of changes in partner roles and slowness of movement. 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. Having access to a professional would always be appreciated. I would like a Relationship Therapist to know about young onset Parkinson’s, and how to support the identity, our new position in society/workforce and their change of roles in a relationship. Foster and provide steps to make the changes required and the impact of those changes in the short and long term. Provide a plan of the steps and timing and outcomes as disease progress. With regards to questions we should be asking children, clarification of how Parkinson’s will affect their parent and them. Reassure them that the disease as we know it now, isn’t hereditary. The direction and format/ subject matter of the survey is capturing a good reflection of the needs of a Young Onset Parkinson’s person.
