Hi all, I have been following this thread with interest an I too have my own stories about the dreaded DA's. I'm still paying back debts of £55,000 and probably will be until I die. When I was prescribed Da's back in 2003 there were no warnings on the leaflets and my neuro certainly didn't tell me of the side effects that were not on the packet. Ray of Sunshine, I know of your case and wondered if I am too late to try to take action against the med manufacturers now?

glenchass

Hi fish,
unable to go on the ropinirole until next week ,so at the moment im just relying on selegiline.been told to get over my chest infection before i start the pd drug which leaves me very vulnerable.was on mirapexin but did not work out ,being aware of the side effects of da,s is very important,and was aware early on their[ was a problem.

GLENCHASS:

The time limit rules for suing the pharmaceutical companies are very complex, and take into account the date they first put the drug onto the market, the date it was first prescribed to YOU, and the time span between you FIRST discovering that the drug had caused your problems and you eventually filing a legal suit.

Best to take advice from a specialist lawyer like Leigh Day in London or Hugh James in Cardiff.

However I can't see any reason why you can't sue the NHS, or your PD consultant (who will be insured against such claims).

Hi Janine,
It's handy isn't it to hear all the different takes on how people get on with their meds.
I've been on Ropinerole for about 5 months now , as the daily Selegiline 10 mgs was not enough. Yes, you do build up to a therapeutic dose very gradually over a few weeks. I am very pleased with how I'm feeling and moving now -- tons better than I was earlier this year. I did have nausea and heartburn at first , but took the Domperidone which was prescribed for that , and that was totally effective. I gradually weaned myself off this anti-sickness drug and only take it very occasionally.
In common with others, quite often, about an hour and a half after I've taken the ropinerole, I feel incredibly sleepy. It only lasts about a quarter of an hour , and then I feel great ! I try not to give in to it and set myself an absorbing task to do -- not reading , as this will send me to sleep . I need something demanding instead !
I still take the Selegiline first thing , and my dose of Ropinerole is 12 mgs spread throughout the day - 4-4-4.
If it is a work day , I split the dose 5mgs in early am, then 4mgs midday, 3mgs late afternoon.
I like having the flexibility to juggle the dose a bit.
Maximum daily dose of Ropinerole is 24mgs. so as you can see , have some way to go before reaching that !
Am aware of other possible side effects ( who is not after all the discussion here ! ) and will be vigilant about that - have warned those close to me to keep an eye on that. I'm not worried tho , in fact, the reverse -- so glad to feel better and be able to move and walk
in a manner that it doesn't look as if I'm 150 yrs old !
Good luck when you start !

Good evening lorna,
thanks for your post ,im not being naive in any way, i should not let my guard down but read what you know about ropinirole it gives me great confidence in starting the drug .i know selegiline 10mg in the morning is well below par for pd . this i hope will help.i would love to get back to some degree of quickest in my mobility walking mainly ,less stiffness .i know there is no magic wand out their, that will take everything away but getting the right drugs help..
i will keep you posted lorna on how things are going,don't start till next week.
you have just given me the lift i need.

janine

Oh good Janine !
Was worried i'd been a bit long winded , always seem to get carried away wiv my thoughts rushing on ahead of my very slow typing finger ! Hope your cold/flu symptoms soon vanish . G. night and pleasant dreams ( that discussion maybe for another time )

Hi

I have a question for those of you who've had side effects from the DA's. Well a few really If you don't mind helping me.

A few people have said to me that the person becomes devious and won't tell the doctor what they're doing, they hide it from the medical profession, and I don't understand why? If you know there's something wrong, which you do at some point - if not necessarily all the time - why do you hide it - why do you not just go to the hospital and get the meds changed and the problem solved so your back to normal, if I had something wrong with me I would go to the hospital and tell them the problem - not pretend I didn't have one???

Also how do you have normal conversations with people? For example, X rang me last week and told me that he only ever had anything to do with me because when he was diagnosed with PD he wasn't sure whether he was still capable of sex, so used me to see if he was, when he found out how good I was he decided why not keep using me until he met someone he really cared about - he has since met someone that he 'really cares about', she is a real 'lady' not like me and he loves her very much and they are very happy together. He sounded perfectly normal during this conversation. Now obviously to my mind this ends all communication!!! But he then rings me the next night and when I ask him why he's ringing he says to be friends!!!!!! (Does using you for sex for a year and half not end any friendship - maybe only I see it that way lol) And he has been ringing me every other night since (I turned off my mobile but had to put it back on as he's ring the house phone all the time) And I've just had a conversation with him right now where he has agreed to meet me next Wednesday - and has promised to turn up (he's arranged to meet me on numerous ocassions before and just doesn't turn up), he's booked into a hotel where a friend of mine works (for golf) and he said I can ask my friend to check the records that's he's definitely booked in so he'll definitely be there. And in each of these conversations this man has sounded perfectly normal - and I don't understand how?? I don't understand which is the real him anymore?? How do you have seemingly normal conversations, I don't understand, what do you be thinking inside, do you be thinking???

Answers on a postcard to .......... I said this to my daughter the other day and she looked at me blankly - does anyone remember this saying? obviously before texts and emails lol

I have to try to get through to him on Wednesday, I've got one shot as I don't know where he lives anymore and has refused to meet me previously - or if I do get him to agree (usually after 2 weeks of begging), he doesn't turn up. He's playing golf all day every day - and has totally lost his grip on reality (although obviously not his grip on his 'real lady'! But his parkinsons nurse says he's sure he has a reason for everything he's doing -nothing to do with medication! Sorry won't harp on about him again! I did think of printing off some of your experiences from above and reading them to him - but will he put two and two together. He says there's nothing wrong with him, that I am the one with the problem and for me to leave him alone, but he's the one contacting me who won't leave me alone.

I'm tired of fighting all the time - if anyone has any information that might help I would be grateful.

Thanks

Amy

Hi Amy, I can understand your frustration, its very difficult for the people who care. I honestly can't say why we don't know what we are saying or in fact doing cos it's the drugs. I stopped taking mine a number of years ago so I now question myself about why I didn't know what I was doing or see the changes for myself. I can only guess that it's the effect that the meds are having on the brain.

Last year my sister had a serious brain operation and during her recovery in hospital she used to talk to us quite fluently. As she progressively got better she was moved to different wards, often with others that were sharing her ward and as a result they all became quite friendly. When my sister was discharged it became apparent that the only ward that she remembered was the last one. She had been in 3 other wards and seemed fine but had no recall of being there or talking to people ect. Why and how I don't know cos she seemed able to hold a sensible conversation get up and use the loo ect but obviously she has no recall of it. The brain is a wonderful and strange thing to understand.

I do hope thing get better for you but you know, if they don't improve you may just need to seek police assistance to keep your friend at bay. You cannot continue your life with this level of bizarre involvement and at some point you will need to withdraw for your own sanity.

Take care

Thanks Glenglass

I lost my sanity a long time ago. I did think of getting the police involved, but I'm in Ireland and it's a small community, and as he is a retired police man I don't hold out much hope. Also when they question him he will just tell them that he has a new girlfriend and I am the one chasing him and won't leave him alone - which he has told me - and to be honest I nearly believed him myself - he sounds so plausable!! So I'm on my own here - but yes I really do need to get it sorted as I can't carry on much longer like this, I'm not living anymore I'm just existing day to day waiting for the phone to ring.

Interesting story about your sister though, and I know there are alot of things he doesn't remember himself.

Thanks again

Amy

When I went to his parkinsons nurse to ask for help, and I explained that this had been going on for 8 months and I needed help as I couldn't cope anymore - he told me he was sure X had is reasons why he didn't want to see me anymore - he made me sound like some mad woman who was chasing a man who didn't want me anymore - and the police, who are his friends will not look at it any differently.

It sounds mad even to me - I was seeing this guy who one day started organising to meet me and then not turning up, but has been ringing me every few days for the last 9 months, and when I look back it coincided with his change in medication. But they all know this man he organises golf tournaments for parkinsons raising thousands, he's been on the radio, holds down a good job, is a well known member of the community - which one of us is the mad one ................