Libido

About Parkinson's and health Impulsive and compulsive behaviour
41

Hi Shelly,

     I am also on madopar 125 now take it 4 times  a day and also 125 controlled release at night,this has helped with sleeping,the only other thing i am on is selegeline 10mg once a day,I have been diagnosed for 2 years now but definitely had PD before then,I have no tremor and am 72 years old.Perhaps you could mention the CR again,I would not like to be without it at night,hope this helps. 

  regards  ANNE

 

 

 

 

 

 

42

Hello Shelly. GG has given sound advice, I was one of those that developed a compulsive disorder whilst using Requipt/ Ropinerole. Over a period of three years I had spent all of our savings and I had so many credit cards it was obscene and  suffered badly at withdrawal from the DA,s..

I.think that you have made the right decision not to accept them and agree with GG about the dispersible Modopar, I too use this during the night and if I have any withdrawals during the day. It works very quickly and I see the results within minutes..

I wish you luck on your journey, please keep us informed of your progress?

regards

Glenchass

 

43

 

Hi Titan

I am one of the DA 'army', I have been on Ropinirole since I was prescribed meds which was August 2013. I am one of one of the lucky ones where I have not had any side effects. I take 4mg once a day, but I don't know if it would effect me if the dose was increased, only time will tell, I take nothing for granted.

 

 

Sheila

 

44

 

             Hello Shel.

     

                   Give my best to J Best of all Best things to yourself also,,,sorry I just cant resist  I HAVE JUST PUT TOGETHER A EXTENSIVE POST TO YOU SHEL VERY DETAILED AND INFORMATIVE I WAS ABOUT TO SEND OR SAVE AND IT EVAPORATED IT REALLY DOES P????SS ME OFF BIG TIME, sorry but it does                        Kindest Regards            FED

45

Hi Titan and Sheila,

I take 4mg of Requip a day, which I have been on since mid Feb this year.

Sheila I agree with you I am one of the lucky ones, but who knows what the future holds, I only know it's working for me at the moment so I am going to keep on with it while I have some quality of life.

Bambi

46

I am sure 4 mg a day is a safe dose of Requip.

My husband was on 36 mg for the last 3 years of his secret life.. And had taken more than the 24 mg a day maximum for many years.

His then neurologist tried to up it to 40  and boasted of having patients on 50 mg.

Research shows the risk increases with dose and hopefully the days of over prescription are over.

Just make sure someone close to you keeps an eye out for unexplained behaviour changes and try not to worry about the future.

Many new treatments are in the pipeline.

Love

GG

47

Hi,

    Again my view has been taken off.Now I know why I don't post anymore.Everything is one sided.

                                                    Titan

48
Hi titan, It's not clear from your message whether you think your post has been removed by the moderators. I'd just like to say that we haven't removed anything but spam from this forum for some time. I think we've had a similar situation in the past. Again, if you think something had been removed please send us an email pointing out what that is. Thanks, Ezinda
49

Thank you Glenchass i will and i am definately sticking to my guns where the DA's are concerned

50

Hi,

    Thanks Ezinda.I will try again,with this revised,toned down version.

Hi,
     The thing is.Most pwp who have come off DA'S still yearn for those moments,when,they at least felt alive.There is a sort of "post DA jealousy"by many.This is when a pwp on DA's is harassed to the point of victimisation by the anti-DA brigade.
     To start Levodopa based treatment when diagnosed with young onset parkinsons,instead of DA's,is a probable slippery slope to earlier alternate complications and side effects.
     Some pwp have been targeted,then persecuted to the ends of pd world by pd seekers of justice and jealousy.Hunted down and repeatedly abused across the forums,for what?,having fun,LIVING.A new lease of life.Granted,there can be extremes.However,everybody should not be tarred by the same brush.
      Some pwp who have gone through DA problems are convinced that everybody will have the same issues.When this is not always the case.Even to the point when they make phone calls,stirring up trouble.When the partners of the person taking DA's are advised of the apparent terrible behaviour of their apparently DA addled loved one.This happened to me.They basically tried to break up my marriage.This interfering on a massive personal scale should not be condoned.
      But these same outspoken people who rally against DA's,sit as we speak,safe and snug and bored to tears,in their drab worn out armchairs,hovering over their overheating laptops.Delving deep into each newbies credentials.To swoop like vultures,hoping to turn once lively pwp into dejected sad reflections of themselves.
      This makes them happy.One of the few thrills they now have.
      I say,take the DA's,enjoy them to the max.Granted,be aware of extremes. You only have One life.
                 "DA or Die,before Levodopa try"
                      Titan     
 
51

Hi Titan

You are entitled to have your own point of view but I do not think it acceptable to attack those who try to help those in the grip of DA-induced OCDs. I , and the other sufferers with whom I have contact, have never interfered in the lives of others, neither are we smug, bored to tears, sitting in worn out armchairs,swooping like vultures on newbies  ,dejected and sad etcetera.

I have no idea how you have arrived at the belief that interference on a massive scale is taking place , committed by a band of jealous PWPs.

I do however know that many patients on DAs become paranoid. My husband accused members of his family of conspiring to have him sectioned and locked away.

He now thanks us for seeking help for him and supporting him through withdrawal to eventually see his Requip-fuelled activities as destructive of the life he had lived  to which he has now returned as a loved husband, father and grandfather.

You urge PWPs to take the DAs and enjoy them to the max.

Do you really mean that ? Do you believe neuros should not warn and partners  not monitor...that the thrills experienced by the DA addicted override the suffering of the family and friends?

I am sad that you feel such venom for damaged sufferers who want to help others avoid the terrible emotional and financial damage they have had to face.

GG

 

52

Hi goldengirl,

             With sadness,I can categorically say that I was harassed and victimised.My Wife was contacted and  upset by more than one person via our land line phone.Plus I was verbally abused by a group of pwp who should know better.The thing is,I know I am not the only person this has happened to.My Wife has read my last two postings on this thread and fully agrees.

             Maybe you are totally unaware of this goldengirl.The thing is,this should not be allowed to take place or condoned.The fact is though it has.Not by just one person,but a collective.I worry about other pwp on DA's that could possibly be going through the same heartache as we speak. 

              I am upset.Let down would be a more apt description.I speak the truth though and would swear by oath.If people like myself don't speak out,who is to know if they are not part of it.It actually destroys the good work that genuine pwp and their families do in highlighting awareness in a constructive way.

              I wish yourself and your partner all the best for the future

                                         Titan

53

Oh Titan

I have no knowledge of this behaviour.

I cannot understand how or why other PwPs would treat you in this way.

How on earth have people found your phone number and what do they accuse you of?

You must get PUK to intervene if these people trace you in some way through the forum.

i have only found information, helpful advice and wonderful support from forum members and try to offer the same to others who post that they find themselves trapped in the horror that my husband and I found ourselves in.

I only wish that you could find this too.

Love

GG

 

54

Hi goldengirl,

           Have had to give this reply serious consideration,thus the few days before response.I am afraid using names or commenting on activity which extends beyond the boundaries of PDUK is not allowed on the forum.Let's just say,it is possibly one of the main reasons why PDUK do not operate a chatroom facility.It can be open to abuse,misunderstandings and upset.Moreso,when the big fish outnumber the small.The big fish being also the ones in control.If this makes sense to you.

             Sorry for being so cryptic

                            Take care

                                   Titan

55

Dearest Titan

I can only repeat that I have no knowledge of these activities.

We all have so much to cope with that it horrifies me that anyone would want to add to the burden.

You know that if you ever want information or support in overcoming the tragedy of DA/OCDs, you know I will do my best to help, as will many others on this site.

Love

GG

56

Thanks GG

       Titan

57

 

             My life was in total turmoil marriage almost wrecked as a result of CABERGOLINE , oh it was fun at  first but as I became more and more Hyper sonic sexual, thats when it became dangerous, I was told to cut out  the C,,,line and within 2 days normality returned, I had endured the worst side effects yet had no  phone calls abusive or otherwise the only people who ring me up are the medics taking time out to check if I am ok all symptoms of O C B have faded, oh I sometimes buy something that I have wanted for ages, but your only here once , and you cant take it with you , this post is to all who have been through bad times as a result of  anti parky drugs,I know there are many.

                                                               Fed

58

SEXY there I bet that caught your eye?

   Hello my friends, well I dont know if this is good or bad but there has been a worrying  change in my libido, I am experiencing dangerous desires for my wife and after so long with  no passion she just does not want to know, we are a team united against the common foe, BLACKHEART but the only time we are close is when the attachment or unattachment of Duodopa takes place, my body and more importantly my mind does appear to be going down the OCD route, the last time I had these feelings about my lovely beautiful  wife,she was happy to go along with my ever more adventurous requests until it got completely crazy, I was, each day living a porn video, my beloved also felt as if she was a sex object and I almost lost her to a friend who offered a shoulder and a bed, say no more, now those outrageous feelings are re asserting themselves, beloved is not interested which is to be expected and I must respect her and the boundaries  she has created, life can be so cruel in so many ways, I long to hold her in my arms I yearn for the passionate kisses we used to share, alas it will not happen she has made it perfectly clear that any sexual activity between us is over, I am sad but will now concentrate on other aspects of my life, I do not want these overtly sexual desires taking me down that route which leads to divorce, has anyone else found themselves in this confusing and upsetting situation.

                                      Kindest Regards         FRUSTRATEDFED???

59

Oh Fed

I am so sorry,

I know how I felt when I was on the Requip and sex became an absolutely obsessive necessity rather than just a pleasure, thank goodness my husband was very understanding and our relationship survived intact.

Now I am off the stuff and on Madopar things in that department have gone back to the pre Requip level thank goodness and sex is back to being somewhat less frequent but much more pleasurable for us both..

I imagine it must be very difficult to feel such desire for your wife but not able to do anything about it, It must be torture.

 

Thinking of you

 

Caroline

x

60

 

  Thankyou Caroline, I am just about to go to NTGH  for Physio so will post a more deserving mail  upon return

                                                                Kindest Regards    FED