Patient research ideas,taking them forward

Inspired by a private response to a posting, I made ,instead of doing nothing,I took my research idea forward and much to my suprise,particularly as it deals with the hot issue of OCD it instantly caught the attention of a research network,I was put in touch with a research team which included.A professor of regional parkinsons disease service ,and a movement disorder neurology consultant,both thought it a good idea.All studies need a Principal Investigator to lead them! so they have involved a clinical lead psychchologist.This week the team are meeting to discuss a pilot study as the first step.If that works out then they will assemble a patient group and interested professionals to help with writing a study and funding application.

A lot of sounding off takes place on forums and many patient ideas are lost in the abyss of archives.So if your truly passionate about something, take it forward,nothings guaranteed but all that hot air and energy might result in something constructive.This has just taken a few weeks and the most dificult part was sharing the idea.

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  • hi pp you know i will be interested in anything that helps us get a better patient experience

  • This is good news!

    OCDs need to have some good research done on them. Particularly from the perspective of a PWP.

    Feel free to use any of my posts on the subject.

    It is important we share ideas and experiences, we need to make progress fast. It doesnt matter who carries them forward if it is for the good of all then whoever is best place should do it.

    I wish you well and hope it bears fruit soon.

    Coincidentally having had no response to my request for support on my OCD idea, I have made contact with a local movement disorder group, which both my Consultant and PD nurse are involved in.

    Where theres a will theres always a way

  • I strongly believe that forums such as this one and others will go a long way in helping GPs and consultants get a much better understanding of Parkinsons which can only be a good thing in the long term ...

  • I'm looking for research on GI problems and PD. HEllooooooooooo out there!

  • Hi PatV,

    I have just the thing for you. Check out this French web site post: gp29.net/?p=2252 You will need to click on the translate button if you do not speak French. Seems like a potential cure for PD. I am working on this myself.

    MM

  • Could not find a translate button. Is this about the poop transfer? I was sent this by a health writer. There's a doctor in Brooklyn who claims to have cured constipation in pwp . I will find out if there is a research component. It involves taking antibiotics first. I am deathly afraid of anything that will make me worse.

  • Hi PatV,

    Yes, it sounds like the same report. The antibiotics are used to kill the bad bacteria that causes ulsers, constipation, lewy body lesions, etc. You can than repopulate your system with PROBIOTIC yogert to get the good bacteria that helps with digestion. This cured 7 out of 8 people it was tested on.

    MM

  • Hi purple! I put up a posting re: PPDs framing a research project, you took it one step further. Whether it was a response to me or simple synchronicity does not matter as long as it is productive YaY. What about geography? or are these products online only? I am in the South west US.

  • what do you mean by 'products'?

  • Well it;s funny, if it wasn'nt so damn uncomfortable. I've just been referred o the Digestive Disease Center at UNM (New Mexico) Glad to share the experience when it happens. Joyce

  • Products as in studies or surveys stuff like that

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