.
According to the agenda Steve Ford, the Chief Exec, was due to do the intro, but I don't know if he did. Nor do I know which forum members, if any, turned up. As campaign manager I assume Sachin will produce some minutes, or at least a report.
Now I remember why we forum members decided to start our own campaign, unshackled by the plodding PUK bureaucracy!
.
I attended the meeting. I'm not very good at these sort of things and felt too nervous and embarrassed and emotional to tell my own personal story. To be honest a day would not be long enough! There were more professional people present than PD sufferer's or carer's but then again that is not surprising - it is not easy for people to get to London. Because people hadn't been able to get there and say their 'bit' a very brave lady whose husband had been on DA's read a letter which was very poignant and really brought home the devastation that these drugs had caused her and her family.
Personally,I am pleased that this subject is at long last being taken seriously. The research aspect discussed by Iracema Leroi and Valerie Voon was very interesting and demonstrates, without doubt, that this is a VERY real problem. Also Jill Paterson from Leigh Dey realised that it was a real problem.
Everyone from the PDS were welcoming and made a great effort to address this issue but there were not many of us there and I went home still feeling that there is a long way to go.
I want to add that I sat next to a professional lady who deals with many PD patients who use DA's and these have transformed their lives and she does not want them to be 'banned' because of this. I completely agree and I am pleased that people are now being screened and being made aware of the side effects. Unfortunately for a lot of us on this forum - and goodness knows how many others -this isn't the case. We are the ones picking up the pieces.
Personally,I am pleased that this subject is at long last being taken seriously. The research aspect discussed by Iracema Leroi and Valerie Voon was very interesting and demonstrates, without doubt, that this is a VERY real problem. Also Jill Paterson from Leigh Dey realised that it was a real problem.
Everyone from the PDS were welcoming and made a great effort to address this issue but there were not many of us there and I went home still feeling that there is a long way to go.
I want to add that I sat next to a professional lady who deals with many PD patients who use DA's and these have transformed their lives and she does not want them to be 'banned' because of this. I completely agree and I am pleased that people are now being screened and being made aware of the side effects. Unfortunately for a lot of us on this forum - and goodness knows how many others -this isn't the case. We are the ones picking up the pieces.
Thanks LL, that was very brave of you! I imagine you felt a bit intimidated, especially if you were alone from our side of the fence. Sorry to have let you down.
Thanks for your account of the day. At last it seems like the ball might be rolling.
Ray.
Thanks for your account of the day. At last it seems like the ball might be rolling.
Ray.
It was not brave of me at all and you did not let any of us down - you have been very brave to tell of your personal story and make people aware of the devastation these drugs can cause. I know you wanted to be there and probably lots of other people did also. Just take heart in knowing that it has now been recognised that this is a real issue - which those of us who have endured it all were well aware of. However one or two people on this forum have doubted our stories. That has upset me a great deal. I hope they will read the latest 'Progress' Magazine and acknowledge the facts.
Thank you Libralady for your update.
You have my thanks and respect for telling your story.And to Ray- you have never let anyone down, you have been a wonderful support for so many.
I e-mailed our story to Sachin and told him to use it in any way that would help.
I do feel that at last there is some recognition of our plight.
But at least we have each other.
x
You have my thanks and respect for telling your story.And to Ray- you have never let anyone down, you have been a wonderful support for so many.
I e-mailed our story to Sachin and told him to use it in any way that would help.
I do feel that at last there is some recognition of our plight.
But at least we have each other.
x
Thanks Libra Lady for the update of the meeting. I do hope that things begin to change. Thanks also to everybody who has supported us on this quest, too many to mention but thanks anyway. It might be worth considering putting together a few personal stories and creating a booklet with them, for obvious reasons people would remain anonymous of course. At least that way the stories might then be available to any professional that deals with pd and indeed pd sufferers themselves. I understand what Libra lady means when she says how hurtful it is when people don't believe what we tell them, however in book form it might just be enough to indicate that there is a real problem.
I'd quite like to see something like the Parkinson's congress arranged, whereby we could have a two day meet with professionals to discuss many subjects. I am attending a meet for people with pd and their carers quite soon in the UK and it certainly isn't costing anywhere near what the Congress cost and block deals could be made with large hotels to keep the costs down.
Glenchass
I'd quite like to see something like the Parkinson's congress arranged, whereby we could have a two day meet with professionals to discuss many subjects. I am attending a meet for people with pd and their carers quite soon in the UK and it certainly isn't costing anywhere near what the Congress cost and block deals could be made with large hotels to keep the costs down.
Glenchass
Dear all,
The notes from the recent meeting and information on Parkinson's UK's awareness raising campaign on impulsive and compulsive behaviours is now up on the website.
You can find it here: http://www.parkinsons.org.uk/about_us/policy_and_campaigns-1/campaigns/compulsive_behaviour_awareness.aspx
Thank you to all those who took part and shared information.
Ezinda
The notes from the recent meeting and information on Parkinson's UK's awareness raising campaign on impulsive and compulsive behaviours is now up on the website.
You can find it here: http://www.parkinsons.org.uk/about_us/policy_and_campaigns-1/campaigns/compulsive_behaviour_awareness.aspx
Thank you to all those who took part and shared information.
Ezinda
Thanks.