Why don't researchers talk to us?

There are many highly intelligent researchers studying all aspects of Pd, but they will not find a cure or improved treatment unless they talk yo those of us who live wit it 24/7

The few I have spoken to, did not know that when you find walking difficult you can run. Did not know some find it difficult to walk through doorways. Most know about the main motor symptoms but how many know about the non-motor symptoms?

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  • Hi Bunny,

    That is just one example of many experiences and adaptations that pwp learn but the doctors or researchers don't. It's all part of a much bigger gap in communication among those who treat, research or have Parkinson disease. Such a big deal was made when the man who walked poorly and stooped hopped on his bicycle and rode off. This is not news to a seasoned patient. Many who are rythmic can dance for hours but will feeze when they try to walk off the dance floor.

    There may be some discussion here that interests you, not to tell your individual personal story but to comment to others who are involved in the business/medical communities. It's an article about Andy Grove, founder and former CEO of Intel. He has PD and there are comments below. I am hoping that people keep it going, you will possibly be talking with researchers.

    mercurynews.com/health/ci_1...

    paulaw

  • Another aspect that has been brought up is the younger vs. the older movement disorder specialists. There seems to be a shift in the mind-set of the newer specialists to reach out and listen to the person with PD. I agree with Paula in that the possibility of you actually having interaction with a researcher is greater now than ever with websites such as HealthUnlocked and Parkinson's Movement.

  • Hi Bunny,

    As a PhD student investigating intonation in PD, I really appreciate your intentions to share your precious experience. I am very sure that there are many serious researchers investigating non-motor symptoms in PD who are willing to talk to you.

    I am recruiting individuals with PD in my country (Taiwan) as subjects for my research, and my problem is that most of people don't feel interested in taking part in research, while the others think investigating changes in speech is a waste of time. I don't blame them, because very few people are aware that changes in speech are also early symptoms of PD.

    Please, be patient with researchers, and keep your enthusiasm in taking part in research, we need people like you to help us to learn more about PD. But if you decide to participate in any research, be sure that they have a proper ethics approval from a trusted health or research organisation. Cheers!

  • Hi all,

    hmm its a bit weird to be asked by a researcher to be patient! LDopa, from 40 years ago and a lot of patience and lives wasted since then. I would rather say to the researchers, get your act in gear. Of course you must have the proper ethics arrangements etc but get on with it. I have a degenerative condition. I'm not patient . I want and need you to be faster and much, much more inviting. I have taken part in a number of pieces of research and have been happy to contribute and put up with discomfort etc. I'm not exactly wading through invitations though. if you don't actively approach us and market yourselves how can we offer to help? Research is important and there may be issues about levels of interest. So make it interesting! Make it appealing! Make us want to do it! We respond to the same drivers as everyone else plus we have the urgency of losing our functioning. Come on researchers - it's your work; it's my life!

  • I don't know if you are based in Britain but have a look at the research forum on the Parkinson's UK website. This organisation is trying to recruit 'lay' members to help steer research in Britain. More power to their elbow.

  • Hi Soup, if you mean me, yes I am uk based and of course I am aware of the PUK work - I have taken part in some of the research they are sponsoring. But this is a charity trying to encourage PWP to contact researchers. Not what I think should happen. Many of the research compnaies have a great deal of money and it is they that should be organsising and contacting us not the other way round, in my opinion.

  • Following Soup's comment, I am involved with research in the UK through DeNDRoN: dendron.org.uk/ Researchers in the UK want very much to make links with those PwPs that have an interest in research.

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