I am so sorry this has happened to you...go back to the beginning of this thread and the obsessive-0/compulsive thread...there is a lot of information.
Take legal advice...many patients have had an expert witness tell the court about the effects of these meds and prove the accused was effectively insane.
Phone the helpline..they may have further advice/contacts.
Most affected patients have suffered as a result of Dopamine Agonists but 7% of patients on Madopar are affected.
Fight back...the drug companies and inept neuros are responsible, not your Dad.
Seriously now,what about the positives DA'S do,you ask anybody with PD on or has taken DA'S, when were their best times.Guess the answer.Deep inside they all kno
However, to control the impulses demands an insight into how the mind is being controlled by the DAs which is not the case in any of the PWP that I have known who have been affected by these drugs.
It is usually the case that a friend or relative finds out about the behaviour when extreme damage is done, such as huge debt and loss of savings have ocurred, sexual behaviour has led to relationship breakdown or police involvement etc.
The PWP usually denies that there is anything wrong, is addicted to the medication and the behaviour and fights against the drug being withdrawn.
Their horror when they survey the damage, having been weaned off the DA, is indescribable and all involved often never fully recover.
If you understand the loss of impulse control and can control the impulses then you are a rare breed. Most are unable to do this.it is, in my opinion, dangerous to urge them to believe they can.
Here we go again I just lost all my intended post.
I haven't been on here for a while as I find the stories of PWP's has not changed since we started on this road back in 1980. I am just so glad that at last there is recognition of the affects of DA's on PWP's it has been a long time coming.
The dreadful situation has gone on far too long, and the terrible affect on people's lives is just appalling. GG you know how it has been for your family and how we suffered with my late husbands change in behaviour, it is certainly true that the PWP does not realise what is happening to them and think everything is normal. Life is hell for all those close to the PWP and the cost can never be fully counted, the hurt takes a long time to heal and only now eighteen months after my husbands death can I feel it subside and the good memories come back. My husband was a lovely man who suffered this disease for nearly forty years and we had a very close marriage so I always knew it wasn't him when it was difficult but that doesn't stop the hurt and constant worry of what may happen.I used to say he had lost the ability to recognise the boundaries of proper behaviour. Watching the one you love suffer is difficult in itself without all the other stuff, my husband was a brave amazing man of great strength till the end and I miss him dearly but please lets hope at last something may be done quickly to stop more people having to go through this and doctors and the PD.uk start to listen to families more and react more quickly.
It is good to read that you are coping with the loss of your dear husband and everything in your post is so true...I will never recover fully from the terrible years of my husband's deviant behaviour caused by the DAS.
I live in dread of it recurring.
I share your wish that doctors warn PWPS about the very real danger of the behaviour being caused by these destructive drugs and that treatment is more readily available.
It breaks my heart to see new victims stumble onto the forum unaware of how and why this nightmare has engulfed them.
Thank you GG yes I am so glad he is free of all the suffering, we had a service of thanks giving and wore all bright colours especially pink which he liked to wear both shirts and ties and the final hymn of you raise me up sung by Josh Groban we did a cd of all his favourite music , the Stones Jonny Cash and Buddy Holly and a dvd of his life both to be played at the refreshments after the requiem mass, I think he would have been pleased.
I wish you all the best in the future and hope you can relax a bit more soon. kind regards Vivian
I know where your coming from with your frustrations.I often get the urges but second thought feel how frustrating our performances can be ,not like the old days.
One thing i do though is relish in some good old necking and kissing.
Sort of like when we were young and didn't go all the way,LOL
Ive also turned my energies more into our political nightmare.But only a little ,nothing excessive.
Got to rely also more on finding good thoughts and deeds.
Fishing is coming soon again,welcome anytime your over here.other side of the ocean.
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!
If your man is taking Dan's they can cause excessive sexual desire that can be difficult to control. Also excessive gambling can happen check leaflets as to what group his meds belong to.
DA's are all listed on this website under medications.
BB xx
Yes, dopamine agonists cause OTT actions. I've long believed that this is due to the way they tweek (or twerk) the reward sensations. If it feels good all our carefully built protective inhibitions and self control dissolve, leaving us and those we love at risk.
I have to say that if you're inclined to act a certain way DAs just let the devil inside loose so to speak.
I'm glad I don't have the genetics to suffer the Menopause. However, when you know the future of your PD will leave you incapable, the urge to love your wife at any given moment since the day you met does make the Men On Pause rather frustrating resulting in coldish showers for both of us for completely different reasons.
So for us, the DAs main impact is not to increase my urges (they have always been there) but plainly put, make me less able to stop being a pain in the ...... about it. That in itself comes across as being more over-sexed when it's more under-fullfilled for want of a more prosaic expression.
The key is to listen to the feedback from your family and friends and to talk openly about how each of you feel. People with PD can openly admit to living life to the full while we still can. Those around us can't all have that luxury and having us going OTT will strain any relationship.
Take care out there
Pill Street Blues (sic)
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
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.
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.
