Raising Awareness of Parkinsons

I get regular posts from a site called Get Healthy or Die Trying who cover a wide range of subjects concerned with health.

I contacted them to see if they would feature Parkinsons and this they have agreed to do. You can see their site by typing Get Healthy or Die Trying on Facebook or by Googling them.

They have asked for ideas on what we would like them to use. I have put more detailed information on my previous post and would be grateful for ideas on how to put our message across

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22 Replies

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  • Great stuff it all helps, I will look into that Thanks x

  • Sue this is wonderful!!! I have not received any answer yet from my email. I am sooo happy you did!!! I left more on your last post.

    I think we should get them to explain more of the symptoms PD causes. How it is not just a shaking problem. Just like you talked about in your first blog on this. How it affects young people too and how anyone can get it. Make all aware that there is no cure and no known cause yet. How we need so much more money for research too.

  • Thanks. What would I do without you? The site has already put a post on about Parkinsons - they don't hang about. I am not sure how many people their posts reaches, but anything is better than nothing. I will pass your ideas on to them.

    Hope you get some success with your email. It is disappointing to say the least that they have not acknowledged this. Good luck.

  • Hi Sue!

    I am sooo happy you have "got the fire lit under" so many of us!! I think it is something we all need to do. I understand those who are dealing with "the monster" may not be able to do as much as they want to for raising awareness but, as Michael Fox said in an interview on Tuesday night on TV. He is always telling people who will listen about it!! All of the "parkies" can talk to others when they go out and someone is watching them. He said he does not hide his symptoms so that people can ask him questions about it!! I think that is soooo brave of him and noble!! My husband is very embarrased of his tremors and I was hoping listening to Michael it would give him a new way of thinking about it.... we shall see.... time will tell.

    Thank you for your good wishes about my email to our tv station. I feel the same way you say that they have not even acknowledged it. That's people for you!! LOL!! I will keep trying!!

  • I have passed your thoughts and those of others on to Get Healthy or Die Trying. So will have to see what happens

    I hope they were sincere in their wish to help. You never know.

    Sue

  • Great!!! I read some other ideas and think they were great too! I have good feelings about this web site! I beleive they will run it for you!!

  • Raising awareness is really important....we shouldn't be living in a PD bubble.

    I would suggest:

    1) Incidence of Parkinsons,

    2) Early onset...it is not a disease of the elderly

    3) Non motor symptoms and their effect on day to day living

    4) Effects of meds

    regards David

  • great suggestions. People associate PD with a tremor but it is MUCH more.

  • Did you know that after Alzheimer's, Parkinson's is the most prolific neurological illness?

    Everyone has heard of Alz so can't understand why PD is not more widely known about.

    I was totally underwhelmed by Parkinson's Awareness Week. I saw nothing, zilch, zero on the local or national news. Perhaps the Parkinson's "professional" charity workers need a kick where it hurts.

  • Hi on our local town we had a Parkinson's awareness day

    It was well attended

    Organised by the local group

  • Did you miss the announcement of the Tracking Parkinson's project? In Cornwall we organised an Education Day and invited a researcher, mobility centre expert, Parkinson's nurses, an Occupational Therapist and a Speech and Language Therapist.

    Before the day a very active person who is of working age but with Parkinson's organised a quiz to raise awareness and money, met with local councillors and an MP to get the message across.

    Several of our members were interviewed on local radio about Parkinson's and how important the new research was.

    Have you got a local group?

  • thats the spirit drew !! :-D

  • how about a copy of the pakinsons uk site where people with pd are asked what a cure would mean to them ? carers could answer too ..

  • Beautiful! May I suggest the Pedaling For Parkinson's program?

    I am in the process of writing an article, letter by painful letter, about the benefits of regular active exercise for PWP. I would be happy to share it.

  • Honis pedalling 4 Parkinson's in the Uk?

    Lol,Jill

    :-)

  • I don't know anything about making a video, but someone who does could show how difficult it is for a PD person to do even simple things... getting in and out of bed, dressing, eating, getting in and out of the car, etc. Maybe it could be an interview. I think that people need to be made aware of how painful PD can be

    also. Someone once said "PD is not a death sentence, but a life sentence."

    We need to find a cure.

    It could be put on you-tube or sent to some public broadcasting TV stations.

    Maybe to Michael J. Fox. He probably has some connections.

  • court,

    Raising awareness im,not big on, I HAVE GIVEN YOU A HARD TIME,WITH THINGS IV SAID,,

    I WILL HELP, WITH THIS NOVEL IDEA

    THIS IS THE WAY TO RAISE AWARENESS

    I WROTE A VERY CATCHY SONG ABOUT BEIN A PARKY

    rather than beggin for donations

    HAVE SIMON COWELL INVOLVED GEET HIM TO RE-RECORD MY SONG

    and this way the public get somethin back, plus everyone will know what we suffer if you write to me directly i will send yu the song,, and if i could be NOTED AS LYRIC WRITER,ALLproceeds to assist parkinson research

    you as organiser will have made history

    EMAIL ASTWRT4@AOL.COM

  • Thanks for this. However, due to a number of personal reasons, I am no longer able to continue as Organiser. Pen1 has taken over for the time being, but due to the lack of offers of help, this may well become a lost cause.

  • oh dear court what has happend ?

  • Nothing drastic. My meds are all over the place at the moment and this combined with family commitments and a husband who thinks I spend too much time on my laptop made me realise that I would not have as much time as is needed to organise Parkinsons Awareness.

    My brother in law has decided to visit from New York for about 3 weeks, we have a family party in Surrey and a new grandchild due end of July. And it goes on ....

    It could well be that because of the lack of offers of help, this project may have to be abandoned anyway. One person, namely Pen1, could not possibly do everything without a number of helpers.

    Hope all is reasonably good with you.

    Sue

  • THANKS SUE AND HAVE A GREAT SUMMER -YOU DESERVE IT X

  • Thanks Shasha.

    Hope the weather lasts for a while. Sure I don't deserve anything. Am going to lay low for a while. My husband thinks, and rightly so, that I spend too much time on my laptop. Still having trouble with my meds, but hope to hear something soon as I am the subject of a case conference!! What next?

    Hope you are doing ok. The site seems very quiet at the moment. Where has everyone gone? Hope I am not missing anything.

    Thanks again for your nice message.

    Best Wishes

    Sue

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