Why the public perception of Parkinson's disease is so important

The public image of an illness or condition has important consequences for fundraising. The success of fundraising, in turn, has implications for research. More successful fundraising allows us to fund more research. More research means better drugs and/or a quicker cure. Public perception of Parkinson's is therefore important.

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  • A group of members of Healthunlocked tried to get other members involved in raising awareness of Parkinsons a while ago. Whilst initially there was a good response, people were not prepared to actually get involved, although most agreed that Parkinsons needed more publicity. It is sadly true that people think that Parkinsons is only a tremor. They do not understand what a complex disease it is, with no two people having exactly the same symptoms. Eventually, we gave up because of lack of people willing to become involved.

  • Yes, it irritates me when people try to put a happy face on PD. And the public (and some doctors) think it`s all about tremors and movement difficulties and few people understand the psychological symptoms can be just a as bad - or worse - and it potentially can affect all systems or parts of the body.

  • The Getting involved bit is often the bit I never understand. There are lots of area's which ask people to get involved, i.e. join a fund raising team or something. However, it is never that easy for many people to do this kind of thing.

    I am certainly not going to stand on a street corner with a sandwich board saying I have PD watch me shake, please help the cause. No one takes note of an ordinary person proclaiming that people should take an interest in helping the cause. There are so many causes out there needing Help and PD is only one of them.

    Now become a celeb! Or some state of notoriety, and people will sit up and take note of what ever you say.

  • I totally agree with this. I AM prepared to stand in supermarket entrances asking for money for Parkinson's research, to wear the T-shirt, to say I am a PwP. I am grateful that medication seems to be working for me and I look and feel well. People don't believe I have the condition, so an interesting dialogue begins. I believe it is essential that those of us in the early stages are visible, to challenge the public perception of this disease and, maybe selfishly but honestly, we may too benefit from any future research. I feel a personal responsibility to become involved. I have written a series of 5 children's books, the first "Does it hurt, Granny?" available from dawnmay.com the 2nd "I'll do it, Granny" on its way. All profits from the sale of the books will be donated to Parkinson's research. I am the granny in these books and I want to say "I have Parkinson's" loud and clear and begin to challenge others' views about the disease.

  • Public perception of most long term conditions is limited to what people read or get from the media and/or have personal experience themselves ie they or friend or relative has such a condition. what needs to happen is for those of us who have it to talk about it to many people as possible and make them want to ask questions with neither party feeling uncomfortable. I live in the UK and have Parkinson's. I started a support group almost 10 years ago. I stood up in one of our meetings and said I would find it helpful if we could express our thoughts and feelings on being diagnosed with P. I said I would start the ball rolling and described the events leading up to being diagnosed, my thought processes at the time and what it has meant to my family and friends and how I saw my future, etc, etc. In a room of just under 15 or so people no other person stood up to relate their experience. Of course not everybody feel confident about public speaking whether it be P or any other topic. However, this was a room full of PwP and their partners. It was a similar experience on another occasion when I tried to do this again. Now everyone talks freely especially since I started a campaign to change the way we are treated as soon as we have been diagnosed with P ie we need to be given time out to understand P, whether we want to take the meds or delay it, understanding all the options available to us, speaking to as many people as possible who have specialist knowledge and talking to fellow sufferers before coming to conclusions about what we want to do next and discussing it with our neurologist.

    What I am trying to say is we, the PwP need to put it out there via our own communities how we cope with P and how it affects our daily lives and it is not just about tremors. For all intention and purposes, people are surprised when I tell them I have P and was diagnosed 10 years ago because they can't "see any signs". They can't see the struggle with simple things like buttoning your shirt, washing up or getting dressed - something as simple as pulling up your undies can cause you so much stress as your arms seem unable to function; tasks such as sorting our paperwork, cutting up vegetables, holding a bowl and trying not to let it slip through your fingers seem very daunting. The fact that it can take me up to 2 hours to get ready to go out amazes a lot of people b'cos they can't imagine all the checks I have to make before stepping out with confidence.

    I and others with P have stood outside supermarkets for collections and I try to get into conversation, with those who are willing to spend a couple of minutes listening, about my having P and what it means. Yes, I do put a positive slant on it b'cos I am not going to let P control me - I am in control but nevertheless we can talk about P and what we want to see happen for which we need support both emotional and financial.

    Of course not all of us can fly the flag and be visible given the nature of P but those of us who can should try our best to spread the message.

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