Dopamine Dysregulation Syndrome

Have we been abandoned?
Hi goldengirl,

Blueeyes47 doesn't work on the project anymore. We can't really give out details about any individual but Suma will be back on Monday and you can contact her with any questions you have about the project.

Ezinda
Thank you for replying Ezinda.
I am sorry to hear that Blue-eyes47 is no longer working with the team. Are there any plans to replace him as it was very comforting to know that an OCD/DA sufferer was having input into the fight?
GG
I'm sorry to hear that Blue eyes is no longer working with the Parkinson's uk team in respect of IOCD behaviours. I do hope that this doesn't mean that we will have no pd person acting as our representative. Please let us all know what is happening?

glenchass
Hi all,

Just to let you know, we continue to have three people who have Parkinson's (as we have always done) as well as professionals on the project steering group, so we definitely have input from people with the right experience guiding the work.

Suma
I am sorry but I have been taking Sinemet plus for ages and I take Madapor too, and next week I am due to start taking Miripexin. To be honest I haven't had any real problems as yet, but I shall cetainly watch out for them in the future. Having read so many tales of woe about these tablets I made the decision to hand over control of our finances to my husband. just to be on the safeside. When my PD nurse suggested Miripexin i wasn't sure but my Pd has got a lot worse so I said I would give them a go. But after everything I have read, I and my husbnd shall be keeping a close eye on thingds.
SUMA
it sems your focus new people and how to help them
but what is the position with these old cases we need help
back in december youi said you wher gettgin g a legal opiniion
, further information re the french case and a solicitor who may help.

Can you help us

colin
Hi Colin,
Yes, I have been looking at getting guidance about the legal position, however the difficulty has been getting an organisation with the right experience to agree to getting involved. There are still a few more organisations left for me to approach - as soon as there is anything to report, I will do so.
Suma

As it is now over 7 years since you posted this, I wonder if you have identified the necessary help yet?

As it is now over 8 years since you posted this, have you identified the appropriate help yet?