Hello,
I wondered if anyone can tell me whether the symptoms described here are linked to behaviour pre PD? Sometimes my lovely man seems a bit OTT, but I didn't know him before the diagnosis, so have no comparison point! Doesn't seem as bad as some of you describe, but...forewarned is forearmed!
Thank you!
Thank you BB, I had look at the information about medications. He's on pramoxipole, seems I'll need to keep an eye on this! No gambling that I'm aware of yet but definitely a bit of furtive online behaviour. How hard is it to talk about this stuff!!Xx
Thanks Pill, guess I'd better hold on tight and try to keep up!!
Anyone suggest a good way into this conversation? I met my partner two years after his diagnosis, didn't know him well beforehand but diagnosis didn't matter to me because he's so much more than that. In past few months he has changed, but i worry that I'm not sure what is personality and what's PD. I feel we're still learning about each other as a couple and now I need to become so much more if we're going to survive. I'm a bit scared and upset right now, his familyhave been absolutely amazing but I can't keep going to them every time I feel like this. Would be grateful for advice if anyone has any thoughts on this xx
The best way is to be very straight and to the point in a very matter of fact way. I personally would start by saying there is something that is giving me cause for concern I know it will not be an easy talk but there is no point in soft soaping the facts otherwise it will tear you both apart.
Hope this helps.
BB xx
Thank you for advice. Think you are right - straight talking necessary xx
Weekend of family summits. Poor man is utterly exhausted with trying to explain and understand himself. We still haven't got into financial issues let alone dodgy internet stuff, just the disappearing acts and lack of communication so far, but he has agreed to go back to neurologist to review situation so progress made. Worse thing was him admitting he gets confused when I'm not with him and that's when he runs, so sad for him, i have to work though! I bloody hate this disease!
hi I have suffered 'the inability to resist the impulse to perform an action that could be harmful, which may include:
- strong impulse to gamble
excessively despite serious or
personal family consequences,'
I have been slowly reducing the pramipexole/mirapexin and I am now able to resist the impulse.
The side effects of these da's have almost devastated me. Please think twice and do your research before taking these drugs if you are offered them. In my opinion they should no longer be prescribed.
Oh Juju
I agree whole-heartedly.
Many thousands of PWP have had their lives ruined by these drugs.
it is 10 years since the Mayo Clinic published research showing 1 in 4 patients on a therapeutic dose of DAs suffered catastrophic impulse control disorders....1 in 3 of men under 50.
But profit and greed mean that drug companies and neuros carry on promoting/prescribing them and lives go on being devastated.
No legal challenge possible as they print a small, inaccurate warning in the leaflet.
How many more ruined lives?
GG
I carnt stand it anymore,go on go on,all that's done,no answers make my brain work,I just don't get it,I don't understand it all.Whats the difference between one and the other,whys my head feeling all scrambled up inside,please please someone explain the difference between them.
ing
Whats probably the worse aspect of Hypersexuality in me at least was I needed to explore sexual adventures with my dear wife, now I have to say at first she was very in fact shockingly enthusiastic , well I dont need to go into detail do I just say everything, yes everyhing, you name it, but one rainy Friday we went to this club and she was quickly chatting to two attractive 22yr olds , and soon they were dancing, and I feel like a pillock dancing she looks so sexy so the more it went on I kNEW i HAD to act as things were getting out of control, we were asked back to a party but there were only three women and 30 blokes so I just drove past the address and that was not the first time I had put my lovely wife in harms way, eventually she sat me down and we talked and talked we were both unaware we were damaging a great marriage, and 2 or 3 shocking events later I stopped the HYPER IN ITS TRACKS, I put a really shocking video on my laptop and placed it where I KNEW SHE WOULD FIND IT,,,(she did ) and the pooh hit the fan, she was so disgusted and I also that I would look as such filth that she warned me if I DID NOT STOP she would go, I STOPPED It was FED4s ownd brand of aversion therapy, now it worked for me but it is very dangerous your partner must be willing and very understanding or it could backfire on you.
I HAVE NEVER BEHAVED THAT WAY SINCE THE HYPER IS CAGED
FED4
Hi @karajaal,
A warm welcome to the forum. I can appreciate that acronyms can be quite tricky to understand if your new to the forum, although I’m not sure what “DA” strands for either. Can you let me know in what context it was used?
Just to help you out a little, here are few acronyms that you may come across on the forum.
PWP: people with Parkinson’s
OT: other half
PD: Parkinson’s disease
PN: Parkinson’s nurse
Meds: medication
We also have a ‘newly diagnosed’ section on our website which has a lot of useful information to help and support you. Feel free to check it out in your own time here - https://www.parkinsons.org.uk/information-and-support/newly-diagnosed-parkinsons. We also run information and support events that are specifically designed for people who are newly diagnosed with Parkinson’s which you can also find via the above link.
Lastly, if you have any questions about your recent diagnosis or about your medication, you can always contact our free and confidential helpline on 0808 800 0303 Monday-Friday: 9am-7pm or via email at [email protected].
Hope you find this useful.
Best wishes,
Reah - Forum Community Manager
DA stands for Dopamine Agonist. Medication usually given first to newer /younger onset people with Parkinsons (PWP). For example, Ropinerol. They usually help with muscular stiffness but have a reputation for having obsessive /compulsive side effects in some people.
HI MAISIE WE HAVE BEEN THERE YOU ARE NOT ALONE ! The neuros reaction was not appropriate my husband came of the DAs gradually and the problem was solved without a catastrophic effect on PD symptoms Go to your gp or PD nurse and get further help another neuro if need be your man needs to be off the DA just like mine did HUGS xx
I have to say that since being on Azilect, Mirapexin and sinemet, that I have virtually no interest in all things sexual.
My wife and i (together 42 years) live more like brother and sister. We even have separate rooms.
As I am weaning myself off of these drugs I don’t feel any sexual urges returning.
Just having a flip through a few pages and saw your comments about the 3 meds. I have to say I still feel the need, nudge nudge. I have been married for 40 years and still find my wife a turn on. Ok we might not perform as often as we used to but it is just as enjoyable for both of us. I don’t think the 3 meds have done anything to stunt my sex drive.
