Who would you choose to be the person, usually a celebrity, to raise awarness of Parkinsons and why?

Now I come to think of it, I have realised that I don't know who the present face of Parkinsons is. The recent press coverage of Ruby Wax and her support for people with mental illnesses made me think how such a person could help raise awareness of Parkinsons. I know America has Michael J Fox and all that he has done and is doing is good for us all, but surely we have a person in the UK who would be willing to give time and energy to bring Parkinsons into the limelight. It should not be the forgotten, and I hate this word, disease.

15 Replies

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  • How about someone like Chris Evans ? Youngish funnyish in the news ?

  • I think we definately need someone to bring Parkinson's to the forefront. There is information out there but you really need to dig deep. My father who is 80 doesn't have a clue about Parkinson's and doesn't use any form of IT. We need much more Media coverage. People say 'well it's not life threatening' and it's not, but neither is mental health (I am not demeaning the seriousness of this), but there are millions of us with Parkinson's and I think we tend to be brushed under the carpet! Rant over....... I think Christ Evans would be fabulous! - maybe we should text in to his show lol x

    dailymail.co.uk/sport/boxin...

    I think much, much more should have been made of the above event. I personally felt comforted that Muhammad Ali has endured Parkinson's for 28 years. My plan if I survive this 'thing' for 28 years is to get wheeled into a glittering dinner and look so good!

  • Aliprentice,

    I believe one of the reasons we need to educate the public about Parkinsons is that it IS in a manner of speaking life threatening. It threatens the QUALITY of life, your ABILITY to live your life, and the SPAN of your life. The general public thinks that the only thing Parkinsons does is give old people the shakes.

    I am not saying that people with Parkinsons can not be positive and still have a happy life, or that they are lacking a jest for life, but everything is a bigger struggle when you are carrying Parkie on your back.....Do people really understand how much pain and suffering is caused by this disease?

    Sometimes I feel that people with Parkisnons are so busy putting on a happy face (metaphorically speaking for those of you with the Parkinsons mask who can't make a happy face) that we keep the truth from the public.

  • I agree.

    Until I was diagnosed two years ago at the age of 46 I thought Parkinsons = old people with the shakes. I now know, through experience, some of the range of symptoms and the difficulties they create, not to mention the problems caused by the drugs.

    I have two young (11 & 13) children and work full time (I find I actually work full time and a half to keep up) and I find that, because I look 'normal' (apart from the parks mask when I'm concentrating or thinking about something), it's expected that I can carry on as normal.

    I do sometimes get the feeling that people think I'm making some of this up or that it's just a lack of willpower stopping me from doing certain things (medication has been making me a bit OCD, staying up late, making things). My partner even said during an argument 'don't you want to get better, get back to normal' Well, yeah, I'd love to 'get better' and go back to being normal but it's just not going to happen.

    I feel that I'm always having to apologise for my condition and do find it a struggle sometimes when i'm in pain and tired and extra shaky cos I'm stressed. It might not be 'life threatening' per se but, as you say, it does affect the quality of life, not only yours but the people around you and I do feel guilty that I'm always late for getting the kids to clubs etc, but am constantly playing catch up.

    Rant over, off to clean the bathroom as sister-in-law is over from the states especially for the olympics!

  • You said that beautifully. Thank you.

  • My Heroine and nominee for 'good spokesperson' is MSP Margo McDonald who despite her Parkinson's continues to be a feisty fighter in all corners of need, and who sits in the Scottish Parliament as an Independant member,

  • I agree we need someone in uk ..has anyone got celebrity friends? I bumped into barry cryer recently who I worked with years ago and we chatted. Maybe i can contact him and ask him. Better among the younger generation though perhaps. What about Russell Howard..hes a caring comedian?

  • Jenny Eclair lives locally to me and only a 5 minute walk from Kings College Hospital which has a great Parks team. I think she'd be quite good as a 'face' for Parkinsons, able to raise awareness in an interesting and thought provoking manner.

  • She also lives in brighton where i am! Dont know how you make contact! Only someone who is a close friend or relative of a pd sufferer would be keen.

  • I get annoyed when it seems one always has to have some celebrity to make people aware of something nowadays, Usually because they experience it themselves. No one bothers untill someone seems to make it fashionable. It seems even diseases can be designer!

    I know I am probably an old cynic, but do we need someone to fight our corner or cause?

    There are lots of awful complaints out there, even much much worse than Parkinsons.

    But we only ever become aware of such if someone famous gets it.

    then it is picked up by the media and causes great interest.

    I realise most will not agree with me on this, but it does make me cross.

  • Actually, I agree with you. It was a question I posted out of interest. Unfortunately, one seems to need a celebrity to get things noticed these days and boy does Parkinsons need some publicity. I know there are a lot of more serious illnesses, but call me selfish, I do not have one of them and I have to fight my own corner,

  • I'm a Parkie and proud to be out and about, beating my own drum. A list of famous Parkies included Terry Thomas. I was a big fan.

  • Jon Stamford ... backed up with members of Pakinson's Movement.

    Who better to relay what needs to be relayed with precision and eloquence?

    Current stats suggest that 4 in every 1,000 people have PD.

    It has been projected by the year 2030 8.7 million will have PD.

    The global prevalence of neurodegneratives diseases is increasing exponentially.

    The economic burden alone demonstrates an imperative need for solutions for a cure.

    And ... completely off the cuff ... a PD Public Awareness advert with music/performance by Ozzy Osbourne. One that would not could not go ignored. A jingle with such aggressively intense impact it would inextricably be lodged in everyone's mind like an earworm.

    PD awareness impact would be had.

  • I recently took part in David Dickenson's Real Deal and I explained that I had Parkinson's and that I was quite agreeable for this to be briefly mentioned on the show. As it was nearing the end of filming and there had been no reference I said that I was giving a donation to Parkinson's Research and that the rest of the money would be given to the family. I wonder if that part will be cut? There's no specific date for the programme to be shown but I was told it would be before Christmas, so let's see.

  • I have chosen 3 people that sprung to mind for different reasons and they all happen to be terrific American actors, (I'm English btw, lol). So, in no particular order. my 3 nominees are as follows:

    Kevin Bacon - I think his recent tv ads re a techno communication product is bright, quite witty and humorous ...

    Will Smith - Not just on his fine acting skills, but I have heard him talk on tv and voice his grave concern on various human rights subjects and he comes across as a very wise, articulate and compassionate human being ...

    Densil Washington - Not simply because he's my fav actor ... well maybe, lol. If you have lived in a cave for the last 2 decades and not watched or even heard of the movie "Philadelphia" then go rent or buy it tomorrow; he's brave, confident, reliable, sincere and will fight your corner, no matter what. Well, at least I know who I would have as my choice as Captain (and pilot) if my onboard computer had gone awol or some sudden crisis arose with the inflight aircraft. :)

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