Patient research ideas,taking them forward - Cure Parkinson's

Cure Parkinson's

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Patient research ideas,taking them forward

11 Replies

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.

11 Replies
shasha profile image
shasha

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

Leyther profile image
Leyther

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

cabbagecottage profile image
cabbagecottage

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 ...

PatV profile image
PatV

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

MagicMax profile image
MagicMax in reply to PatV

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

PatV profile image
PatV in reply to MagicMax

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.

MagicMax profile image
MagicMax in reply to PatV

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

gran5- profile image
gran5-

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.

PatV profile image
PatV in reply to gran5-

what do you mean by 'products'?

gran5- profile image
gran5-

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

gran5- profile image
gran5-

Products as in studies or surveys stuff like that

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