Having Parkinson's and Sex

Sexual Relations Can Change with Parkinson's Disease Symptoms

I never thought when I was younger and stronger that as I grew older I would be writing about sexual issues. Writing about sex maybe but not because of problems relating to sexual intimacy. However, I never thought that I would have Parkinson's disease either but I do.

The issues are unexpected because they relate to muscle strength, nerve endings, hand stiffness, coordination, inability to move easily while prone. In a limited way they relate to loss of my senses of smell and hearing. The changes in my voice affected her because she loved the sound of my voice. I am lucky that meds and exercise have salvaged some of the old tones and the ability to not speak in that PD monotone. The issues relate to what I understood about a sexual relationship.

Parkinson's patients have a much lower level of the neurotransmitter dopamine than they had before they developed the disease. Dopamine affects the whole body physically and emotionally. It especially affects communication since most communication is non-verbal and Parkinson's often brings change in speech, hearing, and facial expression. These changes can creates lack of effective communication between the PWP and his/her carer which can create many misunderstandings and frustrations. This can lead to an avoidance of talking and a possible failure of the relationship.

For many PD patients and their caregivers there is confusion about roles. Many caregivers are spouses or most significant others, who probably got that role without asking for it or wanting it. The woman who was my lover is now my carer; she is very smart and feels she needs to learn everything there is to know about Parkinson's. I would rather forget about PD cuddled against her . Feeling sexual makes me feel younger and alive. I can forget PD for a while. Since PD is a chronic condition, my PD isn't going to get better baring a cure. It becomes that "use it or loose it" thing and I panic then and forget about the kind of communication we need to be having.

Because I feel a sense of urgency about time and the need to communicate to work this out, I think, "first I must put my hearing-aid in. So much for that spontaneity." But then I hear her invite me to her room to watch TV...with the dogs and sometimes the cats. And she turns up the volume so that I don't need my hearing aid. And lights a few candles.

And I realize that letting go of the fears about what we will be able to do and accepting what we can do is a step I have been reluctant to take. What works best for us might not work for you but that's okay. If it is talking about limitations and then what is possible, then that works for you. If it is something else, you may need to find your meeting place.

The good young days may have passed but the good old days are yet to come.