For those who care for someone with Parkinson's disease
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By kbp On 2012.01.16 21:32

By cmonge On 2012.01.17 09:53
I have a similiar problem in that my husband is impotent as a result of Parkinsons. None of the sexual disfunction drugs have worked. We are a young couple (I'm 46 and he is 54) and this is starting to be very difficult for me. We have had to find other ways to be intimate but it's not the same and disappointing for him as he is mourning the loss of his "manhood". I am not sure what kind of commitment yo have with your girlfriend. For me, I am in there for life, in sickness and in health, and also a Catholic so I have no "outside" options. Do not consider yourself selfish, just human. You must find ways to go out and and at least take a break and have fun, even if it's not sexually.

By karolinakitty On 2012.01.17 10:05
kbp, Welcome to the forum...yes it is a caregivers site but we also have some parkies on board who give us their view...

To your question, I am a woman, of course, and can only give you that viewpoint, so I will try and help you out.

With some PD drugs, sexual arousal can become a thing of the past, unfortunately. Also depending on your girlfriends age, she also might be going through menopause, which i can attest sometimes has sexual arousal issues.
I understand the needs of my loved one, I also understand the way of the Parkie world. Sometimes, it comes down to intimacy more than actual sexual activity.
I am no sex counselor here, and i know for some this is very private and shouldn't be spoken in an open forum....I am open about this issue and very pro-sex/

There are several things you can do other than a surrogate or prostitute. One is masturbation WITH your girlfriend...Like I said, the intimacy should be there and the love between you two I am sure is there, but you need to take it to a different level. The "need" is there and I am sure the "want" is there it just needs transferred to a different "type" of sexual preference...

In dealing with a disease such as this...the tremors, the muscle cramps, the overall fatigue..having what the world claims to be a "normal" sex life isn't always a possibility. You have to remember that with this disease, the person is moving on the inside all day and all night long...the body is overall fatigued so trying to get intimate may be tiring her out.
Holding each other is a wonderful thing, it leads to a different type of intimacy and can be very fulfilling when you accept what can't be and finding other ways of getting that special moment can also be adventurous.....You also must come to this aspect of it...If NOT having intercourse is just not acceptable...then maybe you need to move on....we have a saying in our house.... "It'll only get worse" you can go with that, follow the high road and accept what it is or take off down the road, the choice is yours....I myself have found far greater pleasure with the intimacy and other flavors, than the same old standard....

By packerman On 2012.01.18 10:06
i am 56, PD hubby is 55.
we have lots of attempts and less & less "successes".
he does not complain, but does seem to need some kind of physical contact.
physical contact = connection/intimacy for us.

i agree with KK about joint mutual pleasuring.
(as a cradle Catholic, i see nothing wrong with it.)

it is important to keep the lines of communication open between the two of you so that she realizes how important this area is for you, and that you find something that is mutually enjoyable.


By kbp On 2012.01.26 00:42

By susger8 On 2012.01.26 08:45
Dear Phil,

Not everyone is cut out for the caregiver job. And if the relationship is not solid, caregiving becomes a double burden. My own feeling is that if you can't do it with a whole heart, you have to consider not doing it. I would never blame you. Please don't be too hard on yourself.


By sunshine On 2012.01.26 14:15
I agree with Sue, Phil and I honestly believe that it takes a lot of intestinal fortitude to take care of yourself and admit that you just cannot do this anymore. However, that being said, I just would like to add a little from my experience, in that my hubby has Parkinsons, and we have the same issues going on that are posted here in this space. What I would like to say is that I sense that you are truly burning out, it isn't easy to look after someone with this disease but I think it can be much more challenging for a man for many many reasons. I felt so much the same way as yourself awhile back now and I had no idea I was burning out. I was absolutely miserable, nasty, impatient and just so so tired. I hated myself. I knew it wasn't really me showing up here everyday but I just could not reach down inside and muster up any compassion, I was numb, and I so desperately wanted to be hugged and have someone who care about me. It felt so one-sided. Then I went to my GP, talked to him, and he gave me some antidepressants to help me get my serratonin level back up so I could cope. I have to say it has helped a lot as counselling with a person knowledgeable of caregiver issues. With regards the sex issue - we are going to try a counsellor jointly tomorrow actually to try to get past this lack of intimacy between us. For myself communication is huge and I can feel our intimacy level soar when we talk openly to one another. However, my hubby has challenges around this and we are going to try one more time to see if we can get back to our loving feelings for each other. This disease kicks the daylights out of a relationship. I have felt like quitting many times over the years but when I was depleted to nothing my mind was almost made up. I reach out to you Phil from love and from caring and just wanted to share with you, just in case you are where I was then. God bless you in whichever choice you make and know that you are one of many and not a bad person. We heard when we first started out with this journey that many marriages don't make it. Not because we weren't but because we were so in love at that time and it showed. Over the years that love is what has helped us continue on. Remembering, but that being said, that love can also be there and you can decide to let someone go, from the same place of love.
I wish you all the best Phil.

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