Parkinson's Interview with Anonymous

Q:  What is your age and sex?

PWP:  54 Male

Q:  What was your age at the time of diagnosis?
PWP:  50

Q:  Why types of physician are you seeing – a family practitioner, a general neurologist, or a neurologist specializing in Parkinson’s disease?
PWP:  Neurologist specializing in movement disorders

Q:  Explain in detail how you were diagnosed.
PWP:  I saw a local Neurologist who ordered an MRI and referred me to the specialist. I didn’t have any issues , but then again, PD runs in my family.

Q:  Are you married or in a relationship?
PWP:  Married

Q:   Do you have children?
PWP:  No

Q:  Please detail you medication schedule. If you can, list all the medications and the doses from your diagnosis through to your current medication schedule, along with any negative side effects you may have experienced.
PWP:  After my initial diagnosis I was only on mirapex, a dopamine agonist, don’t remember the dosage. After the first year Levodopa was added. I took one 25/100 four times a day along with the mirapex.

About my third year the Levodopa was increased to two pills three times a day and one pill at bedtime.

Also, we switched my mirapex to requip in my third year because I had some side effects from mirapex.

In my fourth year and now, I take two Levodopa four times a day, and during the day I take one requip with my dopamine, but at night I take two requip to help me sleep. My body is now very clearly in “On/Off” modes and I can tell it needs more dopamine.

Q: Were you alone or with you wife when you received your diagnosis?
PWP:  With my wife.

Q:  How did getting that diagnosis make you feel? Was it a shock to you or something you expected?
PWP:  Even though we expected it, it was still like a slap across the face.

Q:  If you expected it, why was it like a slap across the face?
PWP:  Good question. Even thought it was expected, when the neurologist tells you that you have an incurable disease, there is a “facing your immortality “ moment. Even though PD is slow moving

Q:  What was your wife’s reaction to your diagnosis?
PWP:  She expected it as well . She was very supportive.

Q:  How did you tell the rest of your family and friends?
PWP:  Since it runs in the family, no one was surprised. However, even though it was expected, the disease can be so different in each person, to this day I don’t think my family or friends understand the effects PD has on me.

Q:  How did the rest of your family and friends respond?
PWP:  They understood but no one really seems to want to know any details.

Q:  You have specifically asked to speak about the effects Parkinson’s has on sexuality and intimacy. Why is this such an important topic for you?
PWP:  This is such a sensitive and private area that I don’t feel is openly addressed any place I have seen and it can have serious benefits as well as serious consequences.

Q:   What are some of the problems with intimacy you have faced as a result of Parkinson’s?
PWP:  65% of men with PD have erectile dysfunction. We all know there are pills to help this and they do work. However, they can have side effects and your partner may not understand all the challenges you face both physical and mental.

I can only speak for myself but here is a list of issues I feel need to see the light of day:

PHYSICAL

Most of the worst side effects never manifest. But we all know PD leaves the patient with less energy and something this simple can have a big impact on a PWP. ED meds often leave one feeling like they have the flu the following day. A small price to pay for an otherwise healthy person. However, when coupled with PD, the next day can almost be completely lost due to fatigue. This forces one to both plan more for intimacy (weekends when you may not have a lot of activity planned) and at times you may have to choose between maintaining that physical connection with your partner and your own comfort or health. Partners will need to be empathetic and understanding.

MENTAL

PD can cause depression, confidence issues, etc. When you add ED , you often add to the confidence issues and the PD patient may feel even more inadequate or isolated. For a young onset PWP who is still sexually active this area can be like a minefield and without a very understanding partner could have devastating results.

Q:   Do these issues affect your marriage? If so, please explain how.
PWP:  They have not yet but only by the grace of God and a very understanding wife. At this point I think it is more a problem to me.

Q:   Does having Parkinson’s make you feel less adequate in the bedroom? If so, why?
PWP:  Yes. Even without ED issues there are still other issues like energy level, apathy, depression, embarrassment over tremors or loss of shall we say being able to move around with ease.

Q:   Are you on any medication for sexual dysfunction caused by Parkinson’s disease?
PWP:  Yes, Levitra.

Q:   Levitra can often have uncomfortable side effects. What side effects, if any, have you experienced?
PWP:  Mostly fatigue and muscle aches the following day to the point of not being able to function well until about noon.

Q:  Do you feel that it is worth taking these medications when they cause such horrible side effects?
PWP:  Yes because I think it is important to maintain a physical connection with your partner as long as possible. All to soon, the partner will have to face losing the person they married in so many ways. A PWP changes, almost morphs into something completely different over a period of time and I hear spouse/caregivers say they miss their partner even though we are still here, living, we are greatly changed by the disease.

Q:  Do you ever fear a time when you can no longer be intimate, due to Parkinson’s?
PWP:  I don’t fear it. I know it’s coming. But it will be sad. We will find other ways to maintain intimacy.

Q:  How does this possibility make your wife feel?
PWP:  I don’t know for sure. I believe she knows and accepts that inevitability.

Q:   What are the top three obstacles you have had to overcome in regards to Parkinson’s disease and sexual intimacy?
PWP:  ED, Energy level, Confidence

Q:  Do you feel as though you have overcome these hurdles or is it still a work in progress? Explain.
PWP:  Mostly , except for energy level which will always be a struggle.

Q:   Do you discuss these problems with your doctor? Why or why not?
PWP:  We have. It’s important for your doctor to get the whole picture because of the likelihood of depression and other aspects of PD.

Q:   Why do you feel there is not much information regarding such an important subject?
PWP:  People are likely unwilling to share intimate details.

Q:   What advice do you have for others who may be experiencing sexual intimacy problems as a result of Parkinson’s?
PWP:  Be open and honest with your partner and understand that intimacy can take many forms. Resist feeling inadequate and learn new ways to express your love and support. In short, NEVER give in. Adapt and overcome.

Thank you, Anonymous, for such a personal interview! 
For more information on PD and sexual intimacy, please click the following links:

Keeping the romance alive!

Sex and PD: Making Relationships Work

Sexual Function in Parkinson's Disease

Parkinson's Disease and Your Sex Drive