Although it is entirely our decision regarding your medication, I would encourage you to speak to your GP or Parkinson’s nurse about this as well. Everyone with Parkinson’s responds to the medication differently and we’d hate for your Parkinson’s symptoms to worsen as result of you not taking medication.
In regards to the work Parkinson’s UK are doing to educate people about the condition, we raise awareness, change perceptions and work in partnership to drive better services in a number of ways. For more information the work we do in terms of campaigning and policy changing, please visit our website here: https://www.parkinsons.org.uk/about-us/our-vision-mission-and-values
I rarely visit the forum these days…my husband is dying and we look back on our ruined lives…ruined not by Parkinsons but by dopamine agonists.
PDUK has known for over 10 years that at least 50% of patients on these drugs suffer terrible OCDs and their consequences, You have not lifted a finger to help us, to educate the judiciary, to provide legal help for those who go to prison. Other countries have fought the drug company, GSK and won millions in compensation…not the UK.
Married for 56 years, wanting to die for the last 15 .
Pat yourself on the back PDUK.
and no, I do not want the, ‘ Sorry you are sad, would you like phone counselling…?’ reply.
We begged for help. Others are begging you now. You turn your back. Why?
While we know this is an issue and we have done some work on this, we can appreciate your anger.
We have been doing work on this, but maybe not communicating it as widely as we could have. Also our focus has been on our community and the clinical guidelines rather than the judiciary or pharma companies.
I didn’t see that you had replied to my post from July till this weekend. Our stories seem very similar, but not unusual according to Parkinsons UK. From the word go they told me that it was a common problem caused by all types of Parkinsons meds. However, like your father my partner was told by the judge that it would ordinarily be a 15 year sentence but reduced to 5 years or so. He will serve 2 years & 7 months for taking a medicine to make him better.
He was honestly was let down by everyone, the new consultant was adamant it was the drugs but the NHS would not assist her to prove that the drugs had caused this catastrophic change in his personality.
He was assessed by the probation officer, who after one meeting deemed him to be using the meds as an excuse. At the time the crime was committed he had no idea the meds had caused this and was so deeply ashamed he tried to hide it all ( something the judge deemed to be a sign of guilt, not a side effect of these dreadful drugs). So our regrettable stories are very similar.
We have no idea what he will be able to do upon his release next year. But I am determined to try to clear his name, just not sure how. Finding more people with similar problems and getting the law to change would be a start.
My partner is now almost up to the same level of the meds. that he was when he committed the crime. He had been over prescribed by the GP. in error. Parkinsons UK specialist nurse confirmed that he was taking the dose that a person would be on after being on the drugs for some time, the mistake was made after one month, and the consultant was unaware of the increase. After all that we found another consultant who had been recommended. During his sentence The consultant has been able to monitor his response a bit, she always had said that with his response being under her control she could keep an eye on him but obviously being in prison makes it difficult.
Hope your father is ok and that you will soon have him home to rebuild his life.
I’ve read your replies to the many comments regarding impulse control issues and you repeatedly only mention Dopamine Agonists. Your own helpline ( ie Parkinsons UK) informed me that ALL Parkinsons meds can cause these unwelcome side effects). Oh yes like goldengirl I totally agree that Parkinsons UK do not do anything to help people who are so cruelly treated with a prison sentence which is totally inappropriate, no actual solid help. I spoke to several specialist nurses who all said the same thing, that it was the medication. All these empty promises of help have ruined my mans life. No support whatsoever with the legal side. I remember asking if they could recommend a lawyer to help, to no avail. All the stuff that has changed regarding the various written advice is no good, because as it was so eloquently stated by Onestar
In another message, the person with Parkinsons will not understand like a normal person because their brains are being fed different messages via the drugs. The handling of my partners situation has been totally outrageous and something positive has to be done for these victims. He will have this hanging over him for the rest of his life. It’s dreadful, let alone what I’ve had to endure as a person who totally supports him, because I truly know what caused him to do what he did. I am judged so wrongly, because the people concerned have been given no concrete evidence. They just assume that he blames the drugs! He, like me, had no idea what could happen after taking these meds. Trust me if we had, he would never have taken them.
It’s absolutely awful what you and your husband have had to endure, my thoughts go out to you both.
We’ve spoken with goldengirl and we’re looking at some of the suggestions she made about things we could do differently as an organisation. This may take time but we’re committed to supporting our community.
With regard to your comment about our helpline service, I know you feel that we as a charity have neglected to help people in situations that have arisen after taking these medications, but we must clarify that it is the responsibility of the health professional prescribing dopamine agonists to give information about the potential risks/side effects so patients can make informed decisions about whether they wish to take them or not.
We suggest you also speak to the health professionals involved and/or make a complaint if you haven’t done so already? You’re obviously welcome to contact the helpline again so we can offer guidance and signposting on how you can do this, if you wish.
Hi. I have not long joined forum and have an interest in these matters, done a lot of reading and research about addiction, medications, Parkinson’s, because it happened to me a few years ago, I lost every penny I had due to the side effects of medication. Was lucky to survive such devastation and to have deep support from people close to me. There is so much that needs to change about how professionals deal with this issue. It beggars belief patients are still being held accountable and going to jail - my god - for something that robbed them of the mental capacity to make appropriate decisions, that wasn’t their fault and which they were not equipped to handle. Why the persistent rhetoric that “only a small percentage of people experience these problems “. The best study to date was not long ago and showed that 53% of patients on these drugs over a 5 year period experienced some form of impulse control disorder. Meaning people were MORE LIKELY THAN NOT to have a problem over 5 years - so logic tells you how massive this could be over longer time periods- we need drugs for life. I was on sinamet. Class action or case against medics - has anyone?
PD UK you do a lot so well, but lacking on this, I do agree with other comments.
Anna
I forgot to mention- GAMBAN is an app that prevents you being able to gamble on your mobile device. Extremely effective. Should be a prerequisite to prescription of these ICD- inducing drugs. Might not stop people gambling completely in other ways but stops the amount of financial loss occurring literally at your fingertips. Could be a life saver.
Anna
I totally agree nobody told me about the side affects, and I got in terrible dept and I kept telling my consultant, my doctor and Got no help at all people should be held accountable for give you these drugs and not informing you about what can happen, I was on 16mg of reqiup xl and kept getting things in my head I had to do and couldn’t stop it not realising it was the drug and when I did it was to late I was in serious trouble and I don’t mean just by the dept.
This is what a specialist wrote in a letter to my doctor back in 2016 after 4 years on ropinirole. Dopamine withdrawal syndrome is a real phenomenon we are seeing more and more and stopping the ropinirole or similar drugs is hard to do and patients tolerate it poorly. Particularly those who have treatment responsive tremor.
The thing is what do Parkinson’s uk actually do ?, when someone is diagnosed they should be getting in touch with the person and tell them all about Parkinson’s the drugs and all they need to no, it not hard these for a consultant to ask the patient if they’d like to be put on a Parkinson’s database were Parkinson’s uk could get in touch with that person, or is it still like when I was diagnosed I told I had Parkinson’s, told he was starting me on ropinirole, then stud in a waiting room thinking we’re do I go from here and in the 9 years I’ve been diagnosed I’ve faced it all on my own, I’m not feeling sorry for myself I’m a strong person but a bit of help along the way would have been appreciated.
Hi life was almost ruined by taking pramipexole. I had to ban myself from all online gaming and give my husband control of all my finances.
I do not handle any finances, it makes me feel humiliated but it is necessary.
In the USA people affected by the obsessive compulsive side effects of Parkinson’s medications have successfully sued the drugs companies. I was advised that as the information leaflet supplied with the drugs states that the behaviour could affect people then the drugs companies have done enough to warn those who are prescribed them, and leaves us no right to bring them to court. Parkinson’s consultants have given evidence as expert witness
Thankyou both for your replies… I have a lot of responses yet to write.
Juju could you please advise how do I find information on the doctors as expert witnesses. and the Court cases?
Thankyou
Anna x
Hi juju
Many thanks for the article links. I have a lot of similar research gathered on the internet. I am curious exactly what was the purpose of the expert witness, how did he present his information, what did he say, how did his info influence the case. I don’t think the issue should be limited to ‘were you warned’. It extends to what warning was given; how clearly was it explained; who was warned; was there a plan agreed from the outset about what would happen if a problem arose; how adequate was the care that was provided in regards to this issue throughout the time the person was on the drug. How easy was it for person to ask for help in a crisis, how fast was the help provided, was it effective. Giving people a fraction of the info they actually will need if the problem develops does not make the drug or patient safe. The responsibility cannot be handed from pharma to Doctor to patient unless the patient has been FULLY informed of the risk factors and all info discussed along with a close other and regularly, carefully reviewed in an appropriate fashion. People hide addictions because that’s the nature of addiction. People in charge know this but appear to be banking on patients knowing less and so lack the knowledge about how to argue their case. Every trick is played out when powerful groups are opposed by one vulnerable individual. Some medics believe the risk of prescribing these drugs is too high and some feel the risk is not an issue but none of them will stand up and fight for us, yet, at least as far as I know, that’s why I’m curious exactly what was said.
Sorry - this absolutely isn’t aimed at you!! Thanks for your help - it makes one cross doesn’t it!
Thankyou again
Anna
By the way it was pramipexole that got me too in the end and I gave all my finances to my partner to deal with for a while eventually. That was hard enough but not everyone has someone they trust to do this for them, or the relationship might be ruined by the addiction anyway. I hear what you’ve said, and I’ve been there too. Thankyou for sharing this - it’s a hard thing to do, to be vulnerable.
Clearly the warning in the leaflet didn’t save us - a warning doesn’t stop the problem developing, doesn’t take the problem away, doesn’t advise you what to do in between, doesn’t help you mop up the fallout afterwards, doesn’t mention anything about how to safeguard yourself during a lengthy meds transition. Anyone who’s been through this knows that warning isn’t worth the paper it’s written on. It’s like taking taking a mop to clear up a tidal wave.
Anna
Drug companies avoid being held to account due to lack of scientific evidence yet they place a warning on their own leaflet that the medication may cause impulsivity problems? What is a warning if not proof that the risk exists?
My husband also was on pramipezole and suffered from OCD and ICD he is no off this but is still in 3 other antagonists, we’ve spoken to his consultant, our PD nurse about his addiction I’m now at my wits end and don’t know how to deal with it, I’m trying to keep him safe so he has no internet access no access to money but he is now talking about dating sites and is very good at making me feel guilty when I say no, I love my husband dearly we’ve together 36 years but I’m not sure how much more I can take
Hi Sue,
If you look for my earlier posts you can follow my horrendous journey.
Insist that all DAS are stopped.Withdrawal is dreadful…my husband spent a month in hospital.
It is the only way out of this nightmare.
We both had extensive counselling.Make it clear you will leave him unless the drugs are stopped.
Things will only get worse unless you get him off the DAs.
I send hugs to help you on this journey.
Pm me if you need to talk.
Love,
Goldengirl.
