you are an amazing and courageous womwn
i saalute you and your efforts for others
a huge hug to you and yours
judy


>From: Stan or Joan Snyder <[log in to unmask]>
>Reply-To: Parkinson's Information Exchange Network
><[log in to unmask]>
>To: [log in to unmask]
>Subject: Re: Requesting Media  Coverage on PD
>Date: Wed, 24 May 2000 05:04:56 -0500
>
>I made 1 phone call to my local ABC affiliate & asked them if they had
>anyone lined up to tie in w/ MJFox's last show of Spin City. The guy at
>the newsroom was ecstatic to have me volunteer to be interviewed. I sent
>him an email listing some of my favorite pd web sites
>and asked him to please do his homework before he came! Within an hour
>received another phone call asking to interview me on the same
>day-today!! It's not so hard once you make them aware that you are
>indeed newsworthy!
>
>This is a  piece I wrote for the PLWP website:
>  "My newspaper didn't even mention that April was Parkinson's Awareness
>month...why not?" I have been asked this question so many times recently
>and I always have the same answer: the news media in any area just
>reports on things that it considers news. If you think that PD Awareness
>is news, then YOU must make it newsworthy. YOU must make the media in
>your area "Parkinson-friendly."
>
>     This is not something that happens overnight, but if you really want
>to see more mention of PD, NOW is the time to start. Think of this as
>addressing an audience, trying to educate & help your friends and
>neighbors to understand what it is like to have PD. Take advantage of
>the inroads that Janet Reno, Michael J. Fox and Muhammad Ali have blazed
>across the TV screen-who can forget Ali struggling to light the Olympic
>Torch or Janet Reno shaking like crazy but still in charge during a
>recent Oprah appearance or Michael J Fox testifying before Arlan
>Spector, obviously under-medicated?
>
>     I am no way in the ranks of these trailblazers, but I must admit to
>being uneasy about the way that I appear on camera. I have gained so
>much weight since my 2nd pallidotomy and because of the mirapex that I
>hate the sight of myself on camera. My face has no expression anymore,
>my voice is gone, I drool on myself and I cry when asked anything
>remotely personal. I have taken the TV cameras along with me as a fiber
>optic camera was slid up my nose and down my throat and my vocal chords
>were displayed for all the 5 o'clock news watchers to see, flapping
>aimlessly in an attempt to vibrate together. I was filmed in hospital
>gown, shower cap and footies as I walked into have collagen injected
>into my vocal chords and then was filmed unconscious with my mouth pried
>open & breathing loudly through my nose. Newspaper pictures of me have
>included me getting a metal halo screwed into my head on the occasion of
>my surgeries and most recently, a fetching picture of me in a wild &
>very obnoxious balloon hat at my last Parkinson's Awareness Day
>festivities.
>
>The point of all of these true confessions is that it would much easier
>and kinder for me to stay at home with my lift chair & the TV remote and
>let my disease take it's course. But the truth is: PD is not glamorous
>nor is it pretty nor will I allow it to impose its will upon my life any
>more than is absolutely necessary. I push myself to be seen in public,
>bouncing off walls, falling down on Main Street, or whatever it takes to
>make the public notice that what is happening to me, happens to millions
>of others and our voices must be heard.
>
>      It all starts when you decide that you are no longer willing to
>allow your disease to dictate your life. When you reach that point, you
>will find the strength & courage deep inside of yourself...you will find
>yourself talking to the media and you will allow yourself to be seen in
>the unflattering light that PD forces upon us and YOU are the way to
>awareness!!
>--
>Joan E. Snyder    48/10
>[log in to unmask]
><http://www.newcountry.nu/pd/members/snyder/page1.htm>
>"Hang tough.....no way through it but to do it."
>            Chris-in-the-Morning (Northern Exposure)

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