Interview

Dr. Kelly Rees (DKR): I want to talk about holding onto your personal sexual identity as Parkinson’s has progressed; how it has impacted your erotic life, what you do about it.

CT: Before I was diagnosed I was already having erectile problems. I went on Viagra etc, and those drugs worked for a while. Then I developed Peyronie’s. (Peyronie’s disease is a bend in the penis likely caused by minor injury to the penis.)

But then the Parkinson’s diagnosis came.

Before, we had an active sex life. We were pretty adventurous. We were very relaxed and engaged with each other. But then something changed. It was one thing to be fit— running, bicycling, staying up late. I had plenty of stamina. But when Parkinson’s hit it took my energy away, and I became lethargic, apathetic.

Pleasure became remote because I didn’t have the stamina to build up sexual tension. At the same time, my wife was dealing with having to take care of my health. Everything hit at the same time.

We didn’t know what to do. The simple remedy is not to pursue orgasm but to focus on pleasure: to relax, to go with the moment, and not make it a competition. My wife was very good at that and I’ve gotten better at it.

We found ways for me to give her pleasure, but it took a while for me to find my own, and I went on the injection medication Trimix. (Trimix is injected into the penis to produce an erection.) Trimix is cumbersome and you’re sticking a needle in your dick, and sometimes it didn’t work. It doesn’t last long in the fridge and it’s expensive per orgasm. You can go to Vegas and get a suite for what the drug cost. And so over time, we settled into something that was okay, but that was still not fulfilling. I was still chasing something.

Then I heard you give a talk on Parkinson’s and intimacy, and it was very helpful. I started to put the Trimix away.

DKR: You made the shift from chasing orgasm to focusing on pleasure. What helped you do that?

CT: Honestly, getting a little buzzed. It’s always been helpful for me, always amplified the orgasm. I didn’t want to get stoned, I just needed to get relaxed. (Check with your care team and local laws before trying this.)

We took turns. She got first call. I have a hand, vibrating dildos, and massagers to use, and I’d help her with an orgasm first. Then she’d take care of me. That worked for us, and it worked really well.

DKR: It’s really brilliant, to take turns. It’s easier to focus on what’s happening, to give it your whole attention, which is harder to do when everything is happening at once. Everyone gets a turn! You know that you’re both going to receive pleasure and you’re both going to give pleasure. You can focus without the distraction of doing and receiving at the same time.

CT: We’re now in our mid-70s, so age is a challenge, no matter what. We do it about once a month. It doesn’t have to be very often; if it’s good it can last a long time.

I kept my solo sex too. I would do what feels good and then just relax, and not give up. My wife encouraged me to fantasize, that was helpful. I can build up energy even without a hard-on. I relax into it, and going deeper into the sensation gives me an orgasm. I can still have an orgasm if I’m patient and persistent, and that’s good to know.

DKR: Many people stop solo play when they are in a relationship. It’s wise for overall sexual health to keep your erotic connection with yourself. It can mean less dependency on a partner for erotic fulfillment.

CT: When we were younger, we would have date night. We slept wrapped up in each other. A single bed would have been enough for us. Now I sleep in a hospital bed next to her bed because I need to sleep with my head elevated a bit, so we’re not on the same level. Sometimes we schedule lovemaking. I’ve got this heavy-duty locked briefcase in the closet, that’s where I keep the toys. It screams what’s inside to anybody who’s looking at it. When it’s time to get naked, I get the briefcase out, open it up, and then we just see what happens.

DKR: You have developed quite a range of what’s acceptable for a sexual experience for you solo, and for you as a couple. That’s important, because variety is nice, and as we age we can’t always count on the same things working.

CT: My wife puts a lot of store in having memories. We have had a lot of rich experiences, it feels good to remember them without having to try to reclaim something. And yeah, I still want to explore and play.

DKR: Has there been a time that one or the other of you has disregarded your physical relationship or avoided intimacy?

CT: Sure. When she’s mad at me for whatever reason, and we’re not talking about it. We’ve had some really good moments this year, but there have been health issues other than my Parkinson’s, and family issues, that are taking our attention. You have to clear the air, talk it out before you can make love. We both have therapists we see regularly.

DKR: It’s difficult, isn’t it, being a really sexual person with this neurodegenerative, un-sexy disease. What your feelings are about touch and sex specifically about Parkinson’s?

CT: Well, I can’t walk. That’s difficult. It’s hard to kneel, it’s hard to roll around. I can’t move easily. Sex requires a lot of preparation. I’m not limber, I have to make sure that any elements that I need are close at hand, because I can’t just roll out of bed and grab something. Things have to be laid out. Preparing for sex, and then relaxing with it, and then not getting frustrated. Sticking with it.

One of the things that we’re taught about Parkinson’s is you lose control of your impulses. But I have not. I am, however, trapped in my body.There’s no getting better with Parkinson’s. And there’s no company in here. I would like one last sexy adventure, like travel to a sex hotel or something. I’d like the possibility of just expanding myself and having fun. And just to be. It’s something for me to dream about.

When I first got diagnosed, I asked my neurologist if they recommend any support groups and they said, ‘No, It’s really depressing. You’re not far enough along to need them now,’ which is really shocking advice. But they were right. Everybody’s injured. It’s sexless. Everybody’s old, and they’re sick, and they’re hurt.

Now I’m ready, though. I’m in a men’s group twice a month. There’s a couple of people who are in the group who are in their 50s or 60s, who are vital, energetic, but they can’t find a lover. A 60-year-old guy is only gonna get worse. That reminds me that I’m lucky and I’ve got something that I have to really be mindful of keeping and protecting.

DKR: You pay attention to your relationship, you cultivate it. How long have you been together?

CT: Since 1970.

DKR: That’s a really long time for someone to be together and still be focusing and trying to enrich their relationship, That’s wise, and quite rare.

I have one more question for you: how do you talk to your medical care team about your sexual needs and your relational needs?

CT: I simply don’t. Well, only the urologist.

DKR: And how do you talk to your urologist?

CT: We don’t go into detail.

DKR: I’m asking on behalf of other people who aren’t as connected to their sexuality or aware of the impact it can have on their relationship. What advice would you give them? Talking about sex can be therapeutic if it’s done in a consensual way, like with an interested partner or a sex therapist.

CT: Hmm… You can try to get in touch with that part of you which is inarticulate, but knows what it wants. Your erotic nature? And then learn to stay with it. Not give up, but not strive. That’s the challenge.

DKR: So, be persistent and patient, don’t give up on yourself? Stay focused and relaxed?

CT: Yeah, something like that.

Recently I was speaking with a friend who suffered a traumatic loss several years ago. Their loss was still fresh in their mind and heart. The weight of tragedy has only slightly diminished over time, and they struggle daily to maintain, be present for their family, do their job, have a social life.

I was reminded of people attending the workshop The Universal Experience. Participating in and assisting Alan on this powerful workshop I have witnessed people who have suffered painful losses. They may have been divorced, lost their job, lost a dear friendship. They may have suffered the death of a parent, partner, sibling, or child. Some have been trapped in their grief, some stuck in flatness. Some have valiantly striven to be “normal” all the while still suffering inside.

Alan’s structures put you in touch with your whole range of emotions, freeing the places that have become trapped. They integrate feeling with thinking and doing, bringing breath and love back into the center of being.

From Alan:

“The unique processes and meditations of The Universal Experience restore death as an infinite mystery, and life as your very personal journey of embracing all it has to offer, including its ending. In the most natural way, your own experience in these 3 days also gives you all you need to be able to be there with wise and caring presence for loved ones, friends and others coming to the end of their lives.”

You can read more about the Universal Experience here: /http://artofbeing.com/events/the-universal-experience-portland-usa/