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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] ******************************************************************************************