The impulse without the physical means to fulfil it


#1

Parkinson's can be so cruel; it gives you the impulse and desire but takes away the physical means to fulfil that impulse. The presence of an increased desire to be desired (so called "hypersexuality") as a result of taking levadopa and pramipexole together with the fact I am 34, single and suffering from quite aggressive Parkinson's makes that impulse very intense and exaggerates how physically isolated I feel; the feeling is frankly worse than the feeling of my physical symptoms.

Parkinson's, despite the physical symptoms, is very much an emotional disease; the symptoms bother us because they have an emotional impact. I believe there should be a shift in emphasis by the medical profession to also treating the emotional symptoms of Parkinson's (treatments such as cognitive behavioural therapy). This would allow us the space not only to physically move better but also to give us more emotional freedom to be ourselves and not just a disease.

dr jonny

www.dialoguewithdisability.blogspot.co.uk


#2

Dr Jonny

I agree completely. I have found the non motor effects much more debilitating than the physical ones. It is easy to underestimate the impact of impulse control disorders particularly when the desire is for things that seem variously normal, pleasurable and/or harmless. The trouble is that nothing in life is so good that it is still enjoyable when you can think about almost nothing else.

EF


#3
Hi EF I find the meaning of that impulse worse than the feeling itself; the incessant need when my physical body is slowly disintegrating and moving from my control causes a real feeling of isolation. I'm losing my physicality but the mourning is made worse by the incessant need to be wanted for that physicality. It is watching a building fall apart while trying to get somebody to move in. Anyone else feel the same? Dr j

#4

UMMM,What to say,life sucks,now there's a thought.Oh dear,thoughts are rambling again.

    Gotta enjoy yourself while you can dude !

        Amongst the downers

       In other words,when it's up

         Make the use of it

  UMMM,going now,bye!

         Titan


#5

This is the thing that upsets me most about Parkinson's, I still have strong desires but the physical means to fulfil them are sporadic and unpredictable - sometimes I can but mostly I can't. I can get Viagra on prescription but it's effectiveness is rather unpredictable and I don't think we really gave it a chance. It's all rather academic now as my wife hasn't been interested for some time. I cannot blame her because I'm clearly not attractive or desirable anymore but that doesn't alter the fact that now, more than ever, I feel the need to be loved - even  just a cuddle would be nice.

It doesn't help that I moved out of the bedroom several years ago because I developed a snoring problem that kept my wife awake. Until recently I have been sleeping on the lounge floor every night, in a sleeping bag, but lately I have been sleeping on the couch as I now find it hard to get up from the floor, even when clinging onto the furniture. We are still very good friends but that is all; not really husband and wife and certainly not lovers. When the rare opportunity for physical fulfilment arises it's down to me to pleasure myself, which isn't easy due to my trembling, unresponsive hands and although it is physically gratifying when I am successful it is emotionally sterile and empty. I have thought about visiting an escort but I realise that although potentially exciting it would still lack the essential ingredient of love.


#6

Very honest of you Innominate. I think we respond to love and being wanted both emotionally and physically; we can normally reciprocate love in the same way. Because Parkinson's undermines us physically however and at the same time increases the need to be loved (especially somebody to love our crumbling physical body) it reduces this response and reciprocation to dreadful isolation; the disease stops the normal cycle of being in love: you engage emotionally with someone, they reciprocate, then you engage physically which lays new ground for a deeper emotional connection (in an ideal world). Parkinson's dissolves this possibility both for you and your partner.

The solution? I have no idea...

dr j


#7

Parkinson’s disease changes you physically; it drives its car in such a way as to continually cut you up on the motorway of your life; it causes traffic jams, accidents and under takes you while you are sat behind the wheel of your car impotent with road rage: “get the f**k out of my way!!”

This must be the same for partners, family and friends who are driving with you; the scream out of their own car windows, “we are trying to get somewhere Parkinson’s, get the f**k out of our way!!”

This is especially true when you are trying to start a relationship (in my case) or maintain a relationship. Your partner (who has potentially known you for years) or potential partner (who has expectations of what they want in a partner) will expect you to drive at a certain speed and with a certain level of skill. As they are wanting to race ahead with you, you are stuck behind the Sunday driver that is Parkinson’s. Eventually you drift apart (or never drift together) and lose sight of each other.

Parkinson’s makes you and your partner drive at different speeds…


#8

The driving analogy is rather good, it's as well to remember that Parkinson's is a rough ride for our passengers as well as ourselves. The thing is, I'm not sure whether it is better to have a back-seat driver who is vocally critical of your every manoeuvre or one who maintains a polite but inwardly critical silence. It's a subject that Debbie and I just cannot seem to talk about and it hurts because she is still the love of my life.

This lyric, from Pink Floyd's "One Of My Turns,"  resonates with how I feel:-

         Day after day, love turns grey
         Like the skin of a dying man
         Night after night, we pretend it's all right
         But I have grown older and
         You have grown colder and
         Nothing is very much fun any more.

At least I still have a relationship of sorts, with a dependable and loyal friend even if she no longer fits the traditional concept of a wife, and nothing can take away from us the good times we shared before Parkinson's intervened. I feel for those like you, dr jonny, who hope to find romance, leading to a caring, sharing and rewarding relationship, despite having the odds stacked against you. At least when you do find someone you will have the comfort of knowing they love and want you for what you are now, not what you once was but can no longer live up to. I wish you well and hope that special person comes soon.


#9

 Lechery, sir, it provokes, and unprovokes; it provokes the desire, but it takes away the performance (MacBeth)

My performance is wrecked by being unable to turn round in bed which somewhat limits the theatricals.

Fortunately my dear wife of  30 years is very cuddly and very handy at [censored] so that's nice.

I find that only physical stimulation is stimulating and that erotic images no longer have any tumescent  effect whatsoever, as if the wire was cut between the brain and the groin.

On the other hand I tend to stare at anyone remotely attractive.

Such is life.


#10

Thanks Turnip, it seems this problem is far from unique, but of course when we fall victim it's easy to assume we are the only one. I'm not sure if it is comforting or depressing to find there are others in the same boat. How easy it is to come to terms with probably depends much upon whether you have a partner and if so how understanding, encouraging and adaptable he/she is.


#11

Thank you Innominate! Yes, its the tragedy of having something and then it changes (or becomes lost) or the tragedy of never having the thing in the first place. I'm not sure which is worse...the loss of losing it or the loss of never having it

I wish you well too

dr jonny


#12

Hello Dr Jonny            once again your perceptive viewpoint is sadly very like my own, my wife is extremely desirable, our sex life is non existent , when I was hypersexual she thought it was fun and we tried everything, she had ways of, well making everthing happen all I had to do was lie back on the bed and it was really something, however as the years have passed I find it impossible to funtion I still desire her, but I am afraid its  not the same for her, and we now are just good friends, the main reason for my complete disinterest in sex is the treatment I am having  to control prostrate cancer I have injections every 6 weeks and they have completely shut down any sexual function, the change in my ability to go from desire to mindblowing sex has been removed all the connections are severed, the ultimate test was last week, she was going out with her friends, to a party ,I encouraged her to go and I walked into the small bedroom I did not know she was there honest, well she was resplendant in black  basque stockings and suspenders, now normally I would have pounced and the most passionate sex would occur, instead I am thinking why and  for who is she dressing up like that, passion replaced by intense jealousy and suspicion, she realised my feelings were any thing but  passion and explained it may have made her coming home from the party a catalyst ,igniting the fantastic sex life we once had I went into sulk mode,my mind racing, I knew certain individuals at the party were male ex work mates some of who had unsuccessfully tried it on with her , could  that be why she was wearing things she only used to wear for me. I was being very silly of course my wifes loyalty goes without question ,she went to the party and came home, my jealousy was still affecting me and her plan did not ignite any  thing  so we have agreed she wont do it again   isnt Parky wonderful

                                                          Kindest Regards  Fed 


#13

 I find it sad replying to jonny knowing he wont receive it, but I  have a problem,last week my wife asked me if she could go to a nightclub in Newcastle with her friend, apparently they do line dancing and she  loves to dance so I agreed, that was before I knew what she would be wearing. Last week they both went shopping and I was only mildly interested in the new clothing she had purchased,as per, I am interested now, her figure hugging outfit showed off her curvy body,the tight denim jeans effect was always something she looked good in,and the top showed her finest assets in a very impressive way,if you throw in the fact that she is at 66 a very good looking woman I was regretting my  decision regarding the night club, I trust my dear wife and know she is only interested in the dancing, but she said in a earlier conversation that a lot of single guys go there, and her friend has been propositioned on numerous occasions. Well she went dancing last night and I paced up and down and felt most uneasy which became worse as the clock passed midnight, in short I am  becoming very jealous and possessive , when the taxi pulled up I was so relieved and felt a wave of desire sreaming in my head, I had thoughts and feelings I have not experienced since we first met, I then came down to earth with a crash,I am taking a very powerful drug to combat prostate cancer, it works by shutting down testosterone production,it also shuts down  all sexual function,so here is the problem, the PD drugs have induced a ever increasing sexual need,whilst the prostate implants take away any ability to take advantage of that improvement so I am left with a increasing desire for my wife but  cant do anything about it, isnt life marvellous as I held her in my arms last night I wept with the cruel hand life has dealt me, I want her so bad I could scream with the frustration of it all,and she was so excited about her night out, and jokingly told me she had been given six phone numbers by  TOYBOYS ,so you can imagine how I feel I want her to enjoy herself but i do not want her to go back to that club ,or any club, also I will not be controlling she is free to do whatever she wants, I am desperate and sad and jealous and frightened.

                                                   Fed

 


#14

Fed

Talk to your wife don't let it become a huge problem between you ,from a womans point of view it seems that your wife just needed to know she was still desirable , if she was given numbers by toyboys she felt flattered what woman wouldn't, tell her how you feel and that the desire for her is still  very much there  , and explain how going out to the clubs makes you feel i'm sure she does not realise how much it upsets you , be inventive Fed big grin if the desire is there on both sides and  you are both open minded and willing to try new things  you could adapt your sex life ,buy your wife a battery powered boyfriend and have some fun together,


#15

Hello Shelly

                       I have taken your advice Shel , and to my total and absolute amazement , it worked she did not realise my discomfort and has cancelled the night club idea, but wants to visit the sex shop in Newcastle,ME IN A SEX SHOP,I have compromised and she has chosen two of the ,,,,??? battery boyfriends, and a few other things , do they come with instructions Shel,  she went on line, some amazing gadgets.eye rollbig grin

                                  Thanks Shel              Fed


#16

Glad the advice worked Fed can honestly say i have never had any problems in my sex life  always believed in being open with my partner it's a shame he could not deal with the ' in sickness ' part of things  plenty more fish as they say

 

No instructions needed Fed just a sexy imagination big grinwhat's wrong with going in  a sex shop , i have been in quite a few in Amsterdam big grin

 


#17
Lately my charge who has parkinsons and dementia seems to have a three day/night pattern of not been able to switch off even to go to sleep. She last slept Thursday night and since then has not stopped talking to herself. Is this her illness or medication?

#18

Hello Premcare

                      I am not sure how to rely to your post, I feel very sad , It sounds like its the Dementia that is the dominant factor here, but whatever the cause you have to steel yourself as unless your Consultant  or nurse Specialist can offer some alternative medication, things are not looking promising,as you will know there is no cure, all I can offer is myself and everyone else on this Forum will be thinking of you and  hoping against hope that things improve for you and the stricken soul  you care for. 

                        I wish you well in this most sorrowful of times,   Fed


#19
Thank you so much for your kind words. We had a better night last night however it was still pretty tiring. I wasn't sure if their was any sedatives that may help but as im not experienced in medicine ifeel iv no where to turn as doctor's seem to have given up on trying to make this ladies life comfortable x

#20

Hi folks,

how refreshing to read about this subject so openly and tastefully.

i guess I introduced myself  in a manic, needful way yesterday, by barging in left right and centre, because I felt so empty and alone, and yes,  missing a sex life.

my husband couldn't  deal with the PD, We drifted apart, he eventually left and has niw found someone else he wants to marry.

i have tears in my eyes now, feeling incredibly sad. I am truly pleased that he has somebody in his life now,

it's taken me many years to get to get to this point, but I so still love him, and do want him to be happy.

i'm happy that he still keeps in touch and we see each other fairly frequently.

so please excuse my frantic entrance to the forum.

think I need to go and choose some music to begin the day while I do my three times daily, if poss, exercises

again, thanks once again to al of you for being so open and honest.

Equa