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]
