Hi all, How when everything continues to get so personal on golden girls parallel thread can everyone move forward positively."Cloth ears",i assume thats mereads and sees the whole picture along with many others who take exception to being told where they can and can't post.Certain people feel they have the role as moderator on this site.Putting off people from voicing genuine concerns. Amongst the people that may need help and advice by those who have experienced damaging side effects of DA'S,are the very people who are being told to go elsewhere.I am trying to avoid further conflict,so will post my views here. What if a pwp on this forum is posting on here,happily taking DA meds,thinking their life is going smoothly.When in fact they are to quote a figure, amongst"the 1 in 4",who have problems.They may not realise and are looking for answers.It is possible to suffer side effects,and pwp should be able to voice their concerns,share their views on whatever thread they chose.However beyond belief and understanding,potential problem cases are being put off or turned away by those who say they are there to help and listen ,because they they themselves don't like what they are hearing on the Golden girl thread,turning against the very people they should be helping in the process. Again,i feel everyone should be allowed the freedom to post when and where they choose,without fear of an ear bashing from people who have no right to do so.If i think relevant i will comment also.Are those ruling the GG thead told not to post here,no.Why,because this thread believes in freedom of speech. All the best Titan All the best Titan.
titan, are there now 2 titan's or was that just a typing error because your meds kicked in and your fingers were on a roll goodnight and once again thanks for your feedback re my neck injury.
A Q - are DA's considered to be addictive ? I mean the drug not the behaviour they may induce.And if so, why is this not stated on the patient information leaflet? Thank you
cutie, You beat me to it,i was about to send annabernadette this report. To be honest once you understand that PD drugs stimulate many of the same brain receptors as drugs like, speed and cocaine, then its not surprising we are all a bit crazy
As far as I am concerned. You are welcome on any thread on this board.
Your posts are of great use to us all. We all have a different angle on every subject.
As we post our views in a constructive way we see patterns emerge, trends develop.
From this we can understand how the drugs affect us. Things we never even considered become suddenly relevant. Common threads emerge in the way the drugs affect our behaviour. This could be paramount not only in the impact of our daily lives but also in research leading to a cure.
We are the only source of information the medical profession has to work on. They only know what we choose to tell them. My neuro cant get into my head. He has to ask. He is dependant on my telling him and it being the truth.
It is difficult for people to open up on this subject so you end up with very little to go on.
We need to know how the agonists affect you. Good, bad or not at all.
That way we can learn and use the knowledge to protect and support.
Science has a strange way of working. Chance happenings lead to cures.
Let none of us miss that opportunity over futile arguments.
Just as I pop another Requip XL into my mouth, I'm wondering if being on DA's is EVEN more of a positive step for some poeple than first thought. In years gone by before i was diagnosed with PD i would spend spend spend, never saving a penny and buying things i did'nt actually need. I had a compulsive, obsessive desire to always be on my computer, hours at a time, I gambled but not in excess, I had a very high sex drive, I drank but not in excess........I could go on but the basics are that since being diagnosed with PD and starting DA's I'm now extremely careful with money, saving hard and only spending on lifes daily needs. I now have a normal sex drive, bet less than i did before even restricting my lottery goes to two tickets per week, which is even shared with my other half. I now dont have any desire to spend hours on end on my computer or the internet, and I definately have more desire to enjoy the more positive things in life, be it in the garden or spending time with my family, or just getting on with life in a positive everyday fashion and making the most of the time left on this earth I dare say some mind clouded, clothed capped individual will now enter the thread to say its only the DA'S giving me a false sense of security and contributing to the delusion...... Well the facts speak for themselves, money in the bank, less compulsive or obsessive traits than my younger days, nothing except a desire to enjoy the norms of life and if thats compulsive/obsessive then BRING IT ON
Do you not think that maybe people would be pleased for you that you are doing so well, whether they themselves are struggling themselves at this paticular point int time or not.
I've had good times and bad times. Lately has not been so great. But i'll get through it. Just as you got through your past bad times. And how would you have felt then Kyloe if someone had rubbed your face in it?
Sorry that you feel like that Gazelle, I'm actually having a bad day today healthwise. But mentaly i remain positive, hopefull, and looking forward to tomorrow. Hope you feel better now
sorry for what? Sorry that i'm glad you are doing well? Why?
I don't want a row Kyloe, really. But you seem to be making up your own version of the truth. We all want to be positive....no-one wants to be miserable, and sometimes these pd forums are a place I come to for a bit of TLC and understanding...I also hope I can offer support to others.
I am genuinely sorry you are having a bad day...I don't like to think of anyone struggling. I wish you all the best
Why does everyone continue to think that all OCD sufferers HATE the dreaded dopamine agonists? It's just not true. Personally I think they're brilliant. BRILLIANT. BRILLIANT! When I was on DA drugs I found them really excellent at dealing with all my physical PD symptoms, especially mobility. Most people didn't even know I had PD at all.
UNFORTUNATELY one in four patients taking them also suffer OCDs, often as badly as did, or worse. Massive uncontrollable obsessive/compulsive disasters can destroy people, and it's our duty to ensure all newbies know of the issue, and its magnitude.
Hi Ray As you know I am on Requip XL and doing very well with my mobility which was bad before meds. I personally appreciate all the advice and personal experiences that others have shared with us on the forum. We are here on this forum because we have this nasty disease PD or care for someone with PD. To support and advise etc. Not sure why others get so angry. You have made me aware of the evils of which DA.s can do. I don.t feel brainwashed I feel informed. Thank you. best wishes to all PB x
“This thread has been created to give a voice to those people who are currently benefiting from taking Dopamine Agonists and who would like to pass on their experience to others.”
So why the angry backlash against Kyloe’s post?
As ray of sunshine has said many times on the numerous (and mushrooming) anti-DA threads: you don’t have to read this thread if it upsets you.
I fully understand your frustrations at this thread being hijacked, as it shows a lack of respect towards others!
However I'm sure you would accept respect is a two way street. You cant have your cake and eat it! Both Kyloe and titan have shown very little respect today in hijacking the DA aftermath and Compulsive gambling threads. Myself and others have already expressed our dismay at Kyloe's posting made today at 09.38. Not only were the comments insensitive and unhelpful, worse still it demonstrated little or no respect toward those who are still struggling with the impact OCD's caused! Then if that was not bad enough, titan turns the Compulsive gambling thread in to a Bookies betting shop, giving out race betting info. So now we have a thread half filled with serious stories from pwp about DA's and gambling and the other half has become Titans daily betting tips!
I strongly feel both these instances demonstrate a complete lack of respect towards fellow parkinson's sufferers. Furthermore i would ask those of you who seem hell bent on wanting to undermine people wanting to talk about their OCD experiences, too PLEASE PLEASE STOP doing this! Please start showing a little respect towards your fellow PD sufferers.
Also can i respectfully ask the Moderators and PUK Senior Management team too please get a grip of this situation, and lets start seeing some leadership rather than just standing on the sidelines!
Lily you have my word, in that i promise to fully respect the aims of this thread and shall not interfere or try to undermine its purpose. All i ask for in return is the same respect is shown to those who want to discuss OCD side effects caused by DA's!
Whoah! I’m gobsmacked! Here was me all ready for the fight, rehearsing how I should respond to you – whether with anger or amusement – and you go and post this! It’s POLITE! This is going to take some getting used to as I’m still reeling from some of the names you’ve called me in the past. ‘Hell hath no fury’ and all that …
This being a forum, I have no way of knowing whether you have typed your post through gritted teeth or whether you genuinely want to build bridges, but I am more than happy to give you the benefit of the doubt and say: “Let’s shake hands and start again.”
In my own defence, I am not aware of any instances where I have tried to undermine sufferers of DA side effects, but I am as guilty as anyone of conveying an unintentional message and will be extra careful with my wording in future. To be honest, I haven’t noticed anything amiss in the other threads either as it all seems like friendly banter to me but, not only can I be quite thick at times, but I have been busy over the past week and might have lost the gist.
Most importantly though, I am disarmed by your friendly words, and I feel a happier person for them tonight.
reads and sees the whole picture along with many others who take exception to being told where they can and can't post.Certain people feel they have the role as moderator on this site.Putting off people from voicing genuine concerns.
.Why
,because this thread believes in freedom of speech.
goodnight and once again thanks for your feedback re my neck injury.
