Regarding the importance of being in an intimate relationship to me, I am married, but no longer sleep in same room with my husband. I go to bed too late and then take a while to settle…it’s sad but that’s life. I am not currently in an intimate relationship, and I feel differently about intimacy than before I was diagnosed. I’m a different person 8 years on. I’m someone that has many ups and not so ups. My sleep patters are delayed (go to bed at 1am). My body aches when I lay down and I move continuously for about 10mins…he’s still my husband and best friend though. I am experiencing physical barriers to a satisfying intimate relationship. Nothing works like it use to…like a dried up piece of leather. I have undertaken treatments that have impacted positively or negatively on my relationship, for example medications or procedures such as Deep Brain Stimulation (DBS).
Medications have made it so much worse, even tried apomorphine injections but they were atrocious…took way to long to settle and caused me to swell after 5 months. The factors impacting on my ability to have an intimate relationship include a lack of emotional support, fatigue, lack of sleep, anger, the impact of changes in partner roles and rigidity. I have experienced a lack of sexual desire, hypersexuality (sexual preoccupation/addiction) and vaginal dryness. I do not think 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 that it changes the person from being who the are to someone they aren’t so can’t assume their partner will know them. Regarding questions we should be asking children, no idea, my kids have always known me with many of my symptoms…they accept our life as normal, I’m not shown any liberties as I’m their mum, I still work full time, manage my business and take their calls whenever they ring….just like a normal mum. Just please find a cure.
