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1 narkyparky on 24/4/2010, 3:05 pm

Ann

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What a wonderful name! Welcome!. Very Happy


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http://www.parkinsons.ie

narkeyparkey


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Ann wrote:Ann adds - Part of the problem is that we suffer from less movement, less expressive faces, a stillness, low voices, and we don't seem to get the exposure we deserve. I was diagnosed in my early 40s, and to me it was an older person's condition - behind closed doors - people found it embarrassing and stayed home. I find going out hard at times and do not like being stared at - it only makes me worse.

The media do not see it as a feelgood topic I think, and only want the new technology like Deep Brain Stimulation and the Duodopa pump, where what we want is for people out there to understand what it is and accept it. Pakinson's is mentioned when complaining about the disgraceful lack of services for neurology here - and people do not want bad news or depressing reading these days as their lives are difficult already in this time of recession.

It is considered something that affects older people, and while 1 in 10 of us is diagnosed before age 50, 9 out 0f 10 is older and they deserve to have a voice also. To me it robs us of vitality and leaves us existing day by day - hardly the greaatest place from which to start a campaign. David Walsh's cycle (see the PAI at www.parkinsons.ie or www.moversforshaakers.com for more on his efforts - he is 44 - should have galvanised the nation, and has received a good bit of publicity and is worth promoting locally. Some videos on the Movers for Shakers website and also on the Facebook page - can't remember the link but go to Facebook and look up "Parkinson's Association on Facebook!" and there are more there. Hoping to transfer some to the PAI website in the next few days!

3 Re: media attention on 23/4/2010, 12:06 am

ems

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I agree with Clem, people don't know anything about Parkinson's unless it's spelt out to them..i think it should be highlighted more..plus it's considered an elderly persons disease which is not true there are young people out there with Parkinson's also.

4 Re: media attention on 21/4/2010, 8:59 am

ClemMcGann


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lucy wrote:Parkinsons affects almost everything we do
- yes
lucy wrote:do you think it gets the media attention it deserves?
- no

many assume that there is a cure

http://www.mariner.ie

5 media attention on 21/4/2010, 7:27 am

lucy

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Parkinsons affects almost everything we do do you think it gets the media attention it deserves?

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