National Publicity for PD

["Tebay, Wendy M" <wendy.m.tebay@xxxxxxxx>]

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Rosemary,

You definitely made an excellent point there.  Back when we were really
pushing for the Udall Bill, I made an attempt to get a message to Madonna
(who is a big fan of Ali's), to see if she might say/do something in regards
to PD.  Now that's one person who knows how to get attention.  I had posted
a message to some Madonna fan-club newsgroup, and this one guy, who
supposedly could get a message thru to her (altho' I think at that
particular time she was in Europe looking at houses), and he said he would
forward my request.  Whether it ever got to her or not, I have no idea.  I
never heard anything about it, so I'm assuming probably not.  I also tried
contacting Annette Funicello (who has MS, and who sells a line of
collectible teddy bears on the shopping channel QVC, some of the proceeds of
which go to this organization she set up to help fund neurological disease
research).  I emailed the one show host who had hosted the her teddy bear
show the day before, and she also said she would forward my request to
Annette.  Basically I had asked for whatever support/publicity she could put
to bear on the Udall Bill issue.  In this case, I believe the message got to
her, but I don't know what the response was.

I agree heartily that we have to bring PD more into the general public
consciousness.  Maybe I should get someone to make a recording of a "rap"
song/poem that I had written a couple years ago, called YO PD!  (It's an
intentional pun).  hahaha!  But really, I think your ideas were excellent,
that our national groups should consider similar ways to gather attention to
PD.  Maybe we shouldn't use the exact same methods as the others have, it
might draw more attention if we come up with something unique, but the
general idea is a good one.  I think aiming some of the effort at the
younger crowd would be beneficial too.  When I was first researching my
condition, before I or the doctors knew what it was, I looked up my symptoms
in an old medical reference book that my parents had (it had been published
probably in the late 60's or near there).  When using my pd symptoms as a
reference, the book led me right to PD, the only problem was the book
described it as a disease of the elderly, and went on to detail it from
there.  At the time, having no idea that PD could strike younger people, I
thought, "Well, guess that's not what I've got cause I'm not near that age
group." (I was 27 at the time).  I don't really think things have changed
much, i.e., most of the general public has no idea that pretty much any age
can get it.  Alot of people too I think consider it a relatively benign
disease, because the symptoms (at least for the first few years) are pretty
well masked by the drugs.  There is definitely alot of education to be done,
as well as just general advertising of pd.  I think something shocking would
be effective (something totally out of line with the "elderly" image of pd).
Maybe an MTV video.  Maybe we could enlist Beevis and Butthead.  Now that
would be different!  That might get some attention.

Wendy Tebay

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Date:         Tue, 30 Jun 1998 14:29:32 -0700
Reply-To:     Parkinson's Information Exchange <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
Sender:       Parkinson's Information Exchange <PARKINSN@xxxxxxxxxxxxxxxxxxxx>
From:         Abi Murthy <abi@xxxxxxxxxxx>
Subject:      Re: National Publicity for PD
In-Reply-To:  <98B98E951BA0D1119A590000F8045A47892490@xxxxxxxxxxxxxxxxxxxxxx>
              from "Tebay, Wendy M" at Jun 30, 98 02:41:18 pm

Joining the list has certainly increased my awareness of PD.  As Wendy
said, we (my family) thought that the only symptom/minus point of PD
was the tremor (and we only knew poeple with hand tremors).  It did seem
as if it was a cosmetic thing (if only it were!).

We were watching one of the Michael J Fox movies and I told my husband
what I'd read on the list about him having PD- and he was surprised.  His
first reaction was 'But he is so very young!'

Alzheimer's got a bit boost from Ronald Reagan- IMHO.  My brother watched
a PBS documentary on his life and told me that he was glad that my father
had PD and not Alzheimers- he said that with Alz. the person slipped in and
out of his old self and that it was very heart-breaking... But on an aside
it certianly helped spread teh word on the disease.  And you know how PBS
documentaries are- they get shown again and again.