PARKINSON'S MOVEMENT (parkinsonsmovement.com) runs this website - its community site - for many reasons. But our main reason is to hear the true voice of people with Parkinson's. I have Parkinson's and so do Sara and Tom, the other founders of PM. But we are only three.
The polls we run are a vital way of obtaining information. Information that we use to tell drug companies, regulators and the general public about Parkinson's. Information that changes the way they act. Information they listen to.
So when you answer a poll, YOUR voice is being heard. YOU are having an impact. YOU are making things happen.
The converse is true too. If you don't answer the polls, how can we know what you think? The polls are for your benefit too.
Now if you are used to being told how things will be, that's fine. If you don't want your opinion to count, that's fine. If you don't want a say in your future, that's fine.
But we think you deserve better. We think that you have been ignored too long. We think you have things to say. And we want to hear it. We NEED to hear it.
PARKINSON'S MOVEMENT can only listen if you talk
Written by
JonStamford
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I love what you are doing and I try to answer all the poles if they apply to me. Being a young, 48yrs. old person with Parkinson's this has allowed me to see how other people are doing, coping with life and the disease. I for one am a fighter and going to do a fundraiser in my community. There is NO awareness out there for Parkinson's and it is so sad. So it is my job to get the word out. I think it is anyone's job with Parkinson's to do something, just like you have.
I try to take part in each poll for the reasons you give. I joined this site because it is genuinely patient-led & allows us to pursue lines of thought (or not) without fear of being judged &/or criticised by professionals. I subscribe to a number of sites purporting to provide this service including 'Healthtalkonline' for which folk are interviewed & shown on the site sharing their experiences. The problem with this is that there is no feedback or follow-up for contributors ie no sharing. This may be because it is grant-funded & short of cash. This site fills a niche & as such is irreplaceable.
I thoroughly enjoy reading the content on this site. You and your colleagues are providing a very needed service to PD families and I thank you for your endeavors.
I respond to evey poll that applys to me. I think what you do is great. Thanks so much.
On a side note I have seen Parkinsons Awareness ribbons that are yellow, silver or gray. Can anyone tell me the true color so I can order a large one to hang on the tree in my front yard. Thanks. Terri
I have a request, I can go to my blogs and see those I originated. There have been times when I got very involved with a blog someone else initiated. I would like to see those also. Is there any way to track them?
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