How can we raise the profile of Parkinsons?

It is quite obvious from comments posted recently, that most people do not have a clue what having Parkinsons involves. I have asked a number of people whether they knew it was Parkinsons Awareness Week recently, and no one did. There was little coverage on either television or in the press, and in my area, at least no evidnce of collection boxes.

I, for one,, am getting really frustrated about being asked stupid questions about how I am feeling, and also that people do not realise that it is a forever disease. Surely, something could be done to up the profile of Parkinsons. Altzheimers, which is also a neurological condition, is more widely publicised and therefore better understood. People with other neurological conditions are treated more sympathetically and, for the most part, not made the butt for not very funny and often unkind jokes and comments.

Feel better now I have got this off my chest, but cannot come up with a solution. Perhaps someone else has some ideas.

21 Replies

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  • , parkinsons:;because contracting it does not kill you, its significance, is played down, but death from suicide,is not a counted statistic

    IT SHOULD BE

    I WROTE A SONG ABOUT BEIN A PARKY, CALLED..one day youre not

    get simon cowel to promote this , i will send you the song if ylou want to approach simon

    professor

  • Not sure that Simon Cowell would be the right person to promote Parkinsons. I don't think he would be taken seriously, but on the other hand he does have a high profile. Would not have a clue how to get in touch with him.

  • SIMON COWELL,HAS THE TV POPULARITY, FOR ALL AGE GROUPS, MY SONG NEEDS A CELEBRITY TO RECORD AND PERFORM IT, NOW SIMON KNOWS MANY PERFORMERS ,HE IS THE MAN, WHO COULD TAKE THIS TO NO1,A SONG ABOUT WHAT ITS LIKE BEING A PARKY

    SERIOUS IS NOT IMPORTANT, SALES MAKE AWARENESS

    COWELLS OUR MAN

    TRY T0 GET SOMEONE TO CONTACT HIM

    THIS WILL BE OUR BEST CHANCE

  • I am not in the position to take this comment from the Professor any further and certainly not to Simon Cowell.

    However, if anyone else want to take up the challenge and thinks the idea is a good one, please do so. I agree that any publicity is good publicity.

  • Hi Court, Did you see the programme about Barbara Thompson, the brilliant jazz and classical saxaphonist, who has had Parkinson's for quite a number of years. I seem to remember it was a BBC programme and it was excellent. It showed the huge problems of maintaining a career as a top professional musician while coping with Parkinson's and how exhausting it was. Admittedly she has amazing support from partner and friends, but it didn't play down the symptoms.

    We need more of this kind of publicity.

  • Yes. I did see this and what a wonderful person she is. However, I don't know of anyone except those of us with Parkinsons, who saw it.

    Maybe there was not enough publcity before the programme. And, yes, we do need more of this kind of publicity.

  • I agree with everything you say Court. I would love to be involved in acampagin to raise public awareness. Is anyone else up for it?

  • I agree, where do you live, which country. We have been trying to raise awareness of PD for the past 17yrs through many exhausting and time taking events. It appears the only people really interested are the ones affected but we keep trying. Mostly through PD society in England. Its a frustrating one , take care.

  • I live in England. I just don't know how to make people aware that Parkinsons is far more drastic than just a tremor. I did not know much myself until a close relative was diagnosed about 20 years ago and boy did we have to learn quick.

  • I respect the great efforts made by many to raise the profile of PD. But in my view it's a rather hopeless task. The fact is that PD isn't a sexy illness and never will be. It largely afflicts the old and the number of younger PWPs is statistically small. there's only a finite amount of time and resources that the public can devote to charitable concerns, and it frankly wouldn't be right for PD to get more than it's fair share. It's also unrealistic to expect the public at large to become walking medical encyclopaedias. The only thing I expect of people is that they shouldn't make assumptions and that they should accept what I say.

    I do think that there is a much more that could be done in practical terms to support those with PD. Since diagnosis in January 2011, I have received no specific support whatsoever beyond my appointments with my neurologist.

    And by the way, PD does kill. At the age of 46 I can expect a decrease in my life expectancy of more than 12 years. Younger PWPs have a significantly reduced life expectancy. PWPs who are in their 70s can expect just a few years off their life expectancy.

    As for black humour, who cares? It's really important to be able to laugh at yourself no matter what your situation. If people make insensitive comments, it's their problem not ours.

  • I accept a lot of what Mark1 says. However, we still need to fight our corner for all those who come after us. I shall be 76 this year and have had Parkinson's for 11 years. My father in law was diagnosed at 50 and died at 67. My sister in law was diagnose in her late 50's and died, last November at 70. My son- in law has had it for approximately five years, having been diagnosed at 48. My husband and I have a vested interested in fighting for a cure, especially for the young onset. When I am invited to give a talk, I emphasise the fact that 1 in 20 young people with Parkinson's is under 40.

    We are having a couple of Open Days very soon, round small lakes and woodland, which is shared with our neighbours. Half the money we make will be going to Parkinson's for research. More importantly, we hope to have local representatives from the organisation to give information to the visitors. Please pray for good weather. Last year it was incredible, and everyone enjoyed themselves.

  • I make a point whenever I speak in a group, which is often, that I have PD incurable progressive etc. Also to strangers on bus whenever I run over their feet with walker etc.

  • This might sound harsh but to really raise the profile of PD all you got to do is find a way to infect all your world leaders with it. Now, if all of them suddenly got PD, I bet you would see some call to arms like nothing before.

    You know, no body really gave a damn about PD while it was just Ali because most felt he got his from the abuse from boxing. That was the risk he took, got famous and paid, so sad too bad. But when Michael J. Fox got it, wait a minute!!! That is my boy!!!! I grew up with him. Watched all his shows and movies, not HIM!!!! And so, he put his NAME to the disorder and money flowed in and progress is being made. If he had not gotten it, would research be at today's point?

    Let all of Congress wake up tomorrow with PD and see what would happen!!!

    Wayne

  • Wow, lots of good ideas. It is hard for PWP's to do much. We are fortunate that Michael J Fox took the leaps he did. Perhaps a few more famous people will help us one day. We cannot count on a cure in the near future. It has been almost 200 years, and we still do not know what causes PD. Perhaps in numbers; working together we can accomplish more!

  • I think The National Parkinson Foundation here in the US would help to publicize a walk -a-thon. Why couldn't we do one all together the same day? Every country we are all in joined together! Wouldn't that get World attention? We make it a fund rasing event too. Get Michael Fox Foundation involved too. The way they show the New Year come in all over the world would be how they could show different countries walking for Parkinson's!!! Wouldn't that be soooooo cool!!!! WOW!!! How much money could be raised!!!???!!! I would love to make this happen here in San Antonio, TX!!!!! We have 52 States here alone that could each have a Walk-A-Thon!!! How does your country seperate states or what-ever y'all call them in England and how many of them Court? Think of it!!! Wouldn't it be Grand to see that on the next days World's News!!! We Together having made that happen!!!??? All of us who know what PD is and has done to our lives!!!! We all deserve this and I would love to be a part of it!!!

  • This sounds like an ok idea. I wonder if people would be interested. We probably have at least 12 counties in England. More in Wales, Scotland and Ireland.

    Would need a really good organiser to pull it all together. Am sure there is someone in this community who would take this on. Would be exciting if we could get it organised.

    Sue

  • im with you all . but i did a 10k sunday past for parkisons uk in glasgow. it seemed that it was the only charity that had no one there to promote awareness,i had advised them i would be doing the event they emailed me the sponsor forms, i know my friends and i were not the only people there supporting the cause. there should have been banners, t shirts for the runners/walkers ( it took me 2 hrs ). id be more than happy to volunteer for events like this to hand out flyers and discuss parkinsons, everyone knows i have pd i tell everyone,

  • Like you, I tell everyone I have Parkinsons. I think it is disgusting that there was no one from Parkinsons to support you on your walk and promote awareness. Everyone should have had T shirts. What a missed golden opportunity.

  • There were plenty of rumours that a very high profile politician in the UK has PD. I have no idea if this is true and I don't say this to start speculation as to who I'm talking about. But, if it were true, it would have been fantastic for the cause had he come out. It would possibly have helped him as well. Janet Reno, the former US Attorney General, held office for many years during which she was known to have PD.

  • Court, although your post is 2 y old, I also feel like you!.....except that it is a forever disease. We can always hope there is a cure in future! I find that a lot of people think PD and Altzheimers are the same thing! People without PD cannot imagine how it is to have PD. I have very little symptoms after almost 5 y - only tremmors. I am positive and very busy!

  • Thanks for your input. At the time we were hoping to go ahead and try to raise awareness of Parkinsons. We had some good ideas, but unfortunately not enough people came forward to offer help.

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