Closing 'open discussion'

I have to say first of all that Bill has (so far) not had a reaction to DAs.
We count ourselves very lucky.
Bill likes to bet on horse racing, in fact it is about all he can do now to keep his mind alive.As his voice is now quite bad I have to help him place his bets at times. It is only because I read the posts on the side effects that I am aware of what can happen. So I can closely monitor Bills hobby.
In all the years (13) that he has been taking parky meds no doctor has ever told us of the dangers, Not until lately. His new parky Dr is up to speed with this
But still does not go into the specifics of it.
I have to say I do not like reading the posts on DAs, they can be upsetting and frightening, but I consider I need to read them so I am fully aware of what CAN
My heart goes out to those of you caught up in the awful effects.
I don't think the thread should have been stopped. We need to know as much as we can about the drugs being taken and the side effects.
As has rightly been said we are not children.

Have a happy bank holiday :rolling_eyes:[::smile::
Hi Ray, Amy and others interested,
From what you suggest, the solution would be to change the code of practice (eg to include a 'mentor' for the patient (eg spouse, partner, etc) who would have responsibility for monitoring the patients behaviour and reporting to the specialist on any change?
Such a person would have to attend consultations and the specialist would have to include their report in decision makings (currently only the patient and gp).
Has anyone started any activity to encourage this? I haven't come across anything on the internet. If I'e missed something ignore the rest.

I have started making a website to discus this, record personal histories and to start a petition possibly.
Anyone interested?

I think the chances of success are small (try telling a college of specialists what to do!), but it might be worth a go.

BTW I consider this a separate topic as it is not a discussion about DA but about changing the code of practice.

Sorry, can't get that link to work.

We mustn't forget that thousands of PD patients are alone, with no-one to monitor them if they're prescribed DAs. This is potentially VERY dangerous.

To my mind natural justice should be that anyone who administers (prescribes) a substance to a patient should be held fully responsible for whatever effects - good or bad - result from that decision. Thus, if necssary, the Neuro or GP should make follow-up appointments for this purpose - every day if it's needed.

They can't be permitted to just prescribe something as potentially dangerous as a DA, ramble off some mild warning like "keep an eye out for problems", and then disappear for 6 months or more.

You wouldn't do that with heroin, cocaine or LSD, would you?
I'm not to sure I understand your post fully Turnip.
I attend all Bills appointments and have had no trouble with me explaining whats going on with Bill. Of course they also ask Bill how he feels. His treatment has always been discussed with the two of us.
I understand that if you live on your own you may need another person to understand about your meds. That would have to be someone you trust and will listen to if things get sticky. A difficult one I should think.
I apologize if I have misunderstood your meaning Turnip.
I agree with you Ray of sunshine. People living on their own are doubly at risk.
Annesel, I think turnip is homing in on Amy's problem.

Amy is in a particularly complex situation involving several people and different relationships. On top of that, her "Mr X" has what appears to be a big DA problem, but he is denying it both to himself and others.

If she tells his doctors, he (Mr X) denies anything is wrong, and tells them it's HER who's crazy. The medics then have to decide whom to believe, and they're not able to change his medication because SHE says so, when HE says his current drugs are working fine and he's happy.

Without his agreement they're stuck. Particularly since he's convinced them she's nuts anyway.

Really tricky.
my apologies, that should have been - there was an extra character.
the relevant bit is:

To evaluate and monitor adverse effects reported by the GP and the patient.

ie not by anyone else. I suspect they are not allowed to take any other opinion into consideration.

its physically impossible for a neurologist to follow up every patient all the time, particularly if that patient is lying to them. so i think they need to include someone close to the patient who can observe them.

however, i am begining to agree with the admin so i will stop there on this topic.

best wishes
ray of sunshine Thanks for explanation of Amy's situation.

Amy I hope you will be able to resolve your truly distressing situation.
Life must be so difficult for you.I sincerely hope you can get someone to hear what you are saying. All the best
Hi Eileenpatricia

I have an apology to make to you. With all the toing and frowing with people complaining about this and that I lost the plot and took your post the wrong way. When I read it, unthinking, I mistakingly thought you were one of the ones who had no experience of DA's, complaining at the tone of those who had experience. And I apologise for this. And this would not have happened if ONLY people who were interested/ involved in the subject had participated in the thread, this is not an excuse, it was a genuine mistake on my part - please forgive me.

I hope this will not stop you from helping people in future as your knowledge of this subject in invaluable to others who are going through it at present.

Please forgive me.

Hi Ray - and yes his doctors do think I'm NUTS :grin: - even I think I'm nuts to be honest :grin: I actually felt the need to tell them - in my roadside crying, begging for help telephone conversation that I wasn't mad - as I even sounded mad to me :grin:(I can feel tears in my eyes just remembering that conversation, I rang them as a last resort - and it never occured to me that they wouldn't help me).

I would be interested in a petition, and would very gladly join, no, maybe it won't do any good - but in my opinion if it aired the subect and put it in the spotlight it can't hurt. I myself did not know anything about all these problems until I was thrown in a the deep end - I'm very much a newby to this.

I met this man, he was the most gorgeous amazing sexist thing I'd had ever seen :grin: And when he opened his mouth it just got better (you know what I mean girls, sometimes they can look amazing but when they open their mouth you think oh god how can I get out of this :grin:, but things only got better and better :grin: He told me up front that he had parkinsons (you wouldn't know to look at him as his physical symptoms are only slight), and I'm not a particularly stupid person (or didn't think I was) and I knew what parkinsons was. We even used to have a laugh; he has lost feeling in the tips of his fingers so buttons are difficult, so I used to buy tops with the smallest buttons I could find............ no need to explain I'm sure :grin: but just to say you'd be surprised how easily you can open even the smallest buttons if need be :grin:. His parkinsons was never a problem, I knew exactly what I was letting myself in for. We were together a year and a half, he was a really nice, kind, sweet caring and gentle man and I was very happy. We spent a night out with friends, he came back to mine, left mid morning after a lazy breakfast, he went to his next hospital appointment and I got a text to say i was 'the biggest cunt he'd ever ridden', and the rest is history.

Hurt doesn't explain my feelings to be honest, I can live with hurt. I live in the countryside and as I'm driving down contry roads now I look at ditches and fields, and I honestly think IF I PUT MY CAR IN THERE I WOULDN'T HAVE TO DEAL WITH THIS ANYMORE. I'm not going to do that at this moment, but if this carries on for much longer I can't promise that. As anyone who's read my stories, will know he won't leave me alone. I'm at the stage where I'm not even sure I want him back - although I do really - but at this moment I just want peace. I hate him for doing this, I want him to go away, but I still love him, and I go from one emotion to another a 1000 times a day (see I really am nuts Ray :grin:).

I know I have a specific problem, but I'm sure it's happening to more than me. X wants to deal with his parkinsons on his own, which is fair enough, and if it was just simple drugs it would be ok - he's a grown man afterall, an intellegent man, responsible for himself! But these are mind altering drugs. And in my opinion the medical profession arn't equipped to monitor properly either, I personally think these drugs should not be administered unless the person brings another person to their appointment with them who they trust to monitior them and trust to do the best on their behalf, and gives them ultimate control - for that specific thing only, I don't want the person to lose control permanently, that's not what I want. For example, if X had had to have someone with him before they gave him these drugs he would have brought me, and said I trust her - and when I rang them to say what was happening they could have done something. It wasn't that they didn't believe me, they themselves had problems with some of the things I was talking about - they admitted it to me - but as they also admitted that unless he stands in front of then himself and admits it - they themselves are powerless to do anything. If he tells them he wants the same drugs because they are controlling his parkinsons - THERE IS NOTHING THEY CAN DO either, it's a catch 22 situation - there's no end to it.


Tell X that if he doesn't play ball you'll report him to the police for harrassment.

And if necessary DO SO. Don't stop now.

THEY will be able to track him down.
Hi ray

Ah is that not a bit harsh?

I'm a soft touch and want a happy ending :grin:
Maybe it does sound harsh but maybe it will help him realise what he is doing and how its effecting you.Sometimes have to be harsh to be kind.
Dot x

OK test case senario:

Bearing in mind he's a retired guard and I live in a small community where the guards looking into this will be his friends.

I ring the guards
Hi I want to report a stalker
Ok what exactly is he doing
he's ringing me all the time telling me how much he loves me, misses me and thinks about me all the time
and what do you want us to do?
I want you to stop him loving me, missing me and thinking about me all the time

Now to be fair, and with the best will in the world - I sound mad even to me :grin:
Amy, stop acting like YOU are doing something wrong.

You're talking stalking, I'm talking harrassment, they're different.

The authorities don't have to know the full content of your chats. Just say this man is phoning you day and night taunting you, and you don't know where he is or what his number is. The authorities will be able to identify him, his number and his location, then warn him off, under threat of harrassment charges.

He will already know the process, so provided he believes you really WILL go through with this he'll know it's decision time. One way or the other.

The guards won't be able to ignore you bacause there will be a record of your complaint. You can ask for the reference number to make sure.

Thanks Ray, I'll think about it.

I havn't totally lost my mind yet :grin:, what I really want is for people to understand how totally out of reality the whole experience of DA's is, and how it's just not possible when it gets to this stage to sort the problem out.

I will sort it - I'm just waiting until Wednesday to see him - if he turns up :grin: - I think the odds are 1/35000 for a no show and 12/5 for him showing up :grin:

Hi all, Amy I think you already know that I agree with Ray's advice to you regarding reporting Mrx. I understand how you feel about doing that and the reasons why, but unless you do there is likely to be no end to your situation. You just never know it might push him to start seeking help. Do you know if Mrx takes part in any PD forums? Just thinking that it might help him to see some of the things that the victims of DA reaction are saying.

Take care
Hi Glenchass

I know and I do agree, I am really only going to give it Wednesday - and one more thing I want to try as well - and if I get no joy I am going to give up. Not because I want to, but just because even I can see there is no point carrying on with this - its been 10 months, and 10 months will soon turn into a year, and a year and half etc. I wouldn't have believed in the first week that it could drag onto this long.

I really only ever added anything in the first place because people were making out like the side effects were nothing and could be easily coped with, and I just wanted to tell people my story - as it was happening now - that it doesn't always work that way. That reading the patient leaflet and knowing the pitfalls and living it are two totally different things.

No he doesn't read any of the forums but I am going to print out something that someone said and read it to him, there won't be any names included, as the story is similar to his and you never know it might help.

But yes your right I do have to give up and I will.

Amy x
Hi Amy.

I agree with Glenchass. A couple of weeks after being prescribed Requipxl, I started suffering from compulsive behaviour. I already knew about what could happen before I went on the drug from reading posts on this forum. This made me aware and I realised what was causing the behaviour and told my GP and PD Nurse and I was gradually taken off the drug.