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PARKINSN Archives
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Great Barb!!
We couldn't have had a better, more passionate (except maybe Ivan), more
articulate spokesperson. I can't wait to see the article!! And some of
the best of it is that you sensitized the journalist who will always
cover PD stories a little better.
Congrats and thanks from (I think I can say) all of us.
Charlie
Barb_MSN wrote:
> Dear List-family...
>
> I want to share with you all a unique and exciting experience
> I just had.
>
> While reading new Listmail this morning, waiting for my first
> meds of the day to kick in, I got a phone call from a reporter
> from the Daily News, one of L.A.'s two daily newspapers,
> asking to interview me about Parkinson's Disease, and more
> specifically Youth Onset PD.
>
> Her interest in PD, and hence her call, was generated by
> Michael J. Fox's public declaration that he has had Parkinson's
> for the last 7 years. (Thanks Mike, the world-wide PD community
> owes ya BIG one for that tremendous show of courage).
>
> My interview was done over the phone and we spoke for over
> an hour and a half. I managed to get just about everything I could
> ever think of about living with PD, including the email address of
> the PD-List, and told her about Ivan's-caregiver-nightmare
> situation as an example of what some of us have to go thru in
> order to just survive.
>
> I mentioned the Udall Bill, and stressed that this is a disease
> where we may each have some common symptoms AND a
> bunch of unique-to-each-individual symptoms, mentioned loss
> of dignity as we lose the ability to do the simplest things such as
> handwriting, putting on clothes and make-up, lessening of
> voice-volume and "garbled speech," and more.
>
> We covered SSDI, and the limited amount of money received
> from Social Security - not enough to even exist on, much less
> to actually live on. Also spoke about what family-members, and
> caregivers go thru when a loved one has PD, and SO much
> more!
>
> WHEW!!! I'm breathless...
>
> Finally, even tho I have guest speakers for the PD support group
> which I facilitate already lined up thru next June, I felt it was
> SOOO important to.... uhhhhh... "make hay while the sun shines,"
> ... to take advantage of the CURRENT interest in Parkinson's by
> the media that I invited the reporter to be the guest speaker at
> our January meeting. AND she not only accepted, but offered
> to contact several reporter-friends of hers working at the Los
> Angeles Times and other major news sources in order to invite
> THEM to join her in a panel discussion on (working title only)
> "Parkies Meet the Press!"
>
> To take maximum advantage of having the reporters to ourselves....
> at a meeting dedicated to PD, I've already contacted one local PD
> support group facilitator and plan to contact another immediately,
> inviting them to combine their January meetings with my group's
> January meeting so that that we can ALL speak out and share with the
> media what's pertinent to those of us who live with a chronic
> degenerative neurological disease such as PD.
>
> For those who live in the Greater Los Angeles Metropolitan area and
> want to attend this PD support group meeting, following is the
> information you'll need:
>
> WHAT: "Parkies Meet the Press"
> WHEN: Saturday, January 16, 1999
> WHERE: Encino Hospital
> 16237 Ventura Blvd.
> Encino, CA
> TIME: 1 to 3:00 p.m.
> NOTE: Encino Hospital is one long block east of Hayvenhurst, on
> the
> North side of the street. Parking is ample and
> free. A
> snack and beverages will be served.
>
> For additional information or if you have any questions, please feel
> free to contact me either by phone, at (818) 705-3037 or email me at:
> [log in to unmask]
>
> Barb Mallut (who's more than elated at this opportunity)
> [log in to unmask]
--
******************************************************************************************
Charles T. Meyer, M.D.
Middleton (Madison), Wisconsin
[log in to unmask]
******************************************************************************************
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December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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