For those of you who haven't heard it, the NPR story on Parkinson's advocacy
is tremendous.  Below you will find a transcript of the piece.

The vast PAN bureaucracy is frantically copying tape recordings of the
piece, and we will soon have copies available for those who desire them.

Allow me to now take this opportunity to respond to a frequently asked
question:  Will we be distributing taped copies and transcripts of the piece
to all Members on Capitol Hill?

No.  I know first hand that Congressional offices are innundated with all
sorts of unsolicited video and audio tapes, books, reports, and other such
materials.  Some do get read, or viewed, if they look really iteresting, but
most get either tossed or put in a pile of "misc. reference materials to be
reveiwed later."  My experience is that audio tapes are the least effective
vehicle for delivering info to Members and staff -- if they are not already
expecting it.

So with the knowledge that we do not have unlimited resources, I believe the
most effective use of this story is to target it to specific Members, e.g.
those lacking much knowledge of Parkinson's, or undecided about the Udall
bill -- and only give it to them once we've sold them on how good it is.
The best thing to do is to hand the tape and the transcript directly to the
Member and/or staffer, once you've told them about it and got them
interested.  Use it like the Funding Disparity Chart or Fetal Tissue Fact
Sheet, as another effective tool in your advocacy tool box.

Of course, we will be providing copies to our Champions (Upton, Waxman,
Wellstone and McCain), as well as to any Members, advocates or support
groups who want them.  Transcripts will be available at our website
(http://www.pdaction.org), and hardcopies will be available at the home
office (800-850-4726).

This story is indeed another compelling and pursuasive weapon in our
arsenal, and I feel strongly that it's far too valuable a weapon to squander
on indiscriminant carpet-bombing of Capitol Hill.  (Well, with Bob Dornan
out of Congress, somebody has to make the ridiculous military metaphores!)

And finally, I feel aobligated to mention that these tapes are costing us
about $1.50 each -- and with labor, that's about $1.52, so whatever people
can do is greatly appreciated.

Enjoy-

<Show: WEEKEND ALL THINGS CONSIDERED> <Date: JANUARY 12, 1997> <Time: 20:00>
<Head: Parkinsons Disease> <Sect: News; Domestic> <Tran: 011207np.216> <Type:
PACKAGE> <Time: 20:46> Part 1 of 1

DANIEL ZWERDLING, HOST: Sometime in the next few weeks, a small group of
activists will take to Capitol Hill to try to persuade members of the new
Congress that the nation is committing a cruel injustice against roughly 1
million sick Americans.
Most of you have heard of Parkinsons disease, obviously. But the activists
argue
that few people realize how devastating it is, and just how many Americans
have
it. And they say the federal government isn't doing anywhere near enough to
search for a cure.
On Friday, a handful of Parkinsons warriors huddled at a popular restaurant
just
a few blocks from the Capitol, to plan their Congressional attack.
SOUND OF A RESTAURANT
1st PARKINSON'S ACTIVIST: We can sign up as many people as possible so we
force
the committees to have early consideration of this bill in this Congress.
2nd PARKINSON'S ACTIVIST: Well, I agree. But I think...
ZWERDLING: For the past few years, these activists have been lobbying one
legislator after another, urging them, pleading with them, to boost federal
funding on Parkinsons research.
And we decided to follow one of them, to learn how victims of a
little-understood disease try to work the system to make their suffering a
national priority.
The story began last spring at a hotel ballroom in Washington.
CROWD SOUNDS AND MUSIC AT A HOTEL BALLROOM
It's a tradition in the Nation's Capitol. A nondescript hotel. A cocktail
hour.
And a dinner of chewy chicken. And, if you're lucky, guests who write big
checks
to fund your lobbying crusade.
As well arrived at the fund raiser for the Parkinsons Action Network, we found

one of the diners limping down the hall. Millie Kondracke (ph) said her
Parkinsons symptoms are getting so bad that she keeps losing her balance, and
at
times she wears a bicycle helmet around her house.
MILLIE KONDRACKE, PARKINSONS DISEASE SUFFERER: I have six stitches in my eye,
and I have three in my head. I fell.
ZWERDLING: Where do you fall?
KONDRACKE: I fell and hit my husband's dresser. I fall at least once a day,
and
I get hurt once a week.
ZWERDLING: People often think of Parkinsons as an elderly people's disease,
but
actually many victims are middle-aged, like Millie Kondracke. Kondracke
worked
for years as a psychotherapist, but quit because she's too sick to treat her
patients.
As the waiters serve the appetizers, Kondracke says it's crazy they have to
hold
a party like this to scrounge for money to make Congress understand how
Parkinsons affects the nation. And it makes her angry.
KONDRACKE: I feel like I have very little time before I feel like I'm dying.
Even though research is five years away from cure, that's what people say, I
don't feel like it's going to happen. I just feel like I'm waiting to die.
JOAN SAMUELSON, MASTER OF CEREMONIES AT PARKINSONS ACTION NETWORK: Hi
everybody.
Thanks so much for coming. This is a wonderful evening for the Parkinsons
Action
Network and the Parkinsons community.
ZWERDLING: According to some estimates, 50,000 Americans discover they have
Parkinsons every year, including boxer Muhammad Ali and Attorney General
Janet
Reno. Even the Pope has Parkinsons, according to some reports.
And as the banquet got underway, Master of Ceremonies Joan Samuelson
suggested
that Parkinsons patients have to blame themselves in part for their lack of
visibility.
SAMUELSON: With our bravery, what we've done is we've rendered ourselves a
bit
invisible. Because we want so badly to be out in the world, and living and
functioning just like everyone else. So we don't complain very much.
And as a result the American public hasn't known how awful Parkinsons is. And
the Congress hasn't known how awful Parkinsons is.
ZWERDLING: And they haven't known, Parkinsons activists say, partly because
victims can mask their symptoms with drugs for five to ten years, until the
effects of the medications wear off.
Nobody knows exactly what causes Parkinsons, but scientists do know that it
destroys the brain cells that produce a crucial chemical, called dopamine,
which
directs the brain to control the body's movements.
So as the disease progresses, you get weakness in the limbs and uncontrolled
shaking, and eventually many victims end up paralyzed and unable to swallow
or
speak.
Some groups have been working for years to raise money for Parkinsons
research.
But according to federal statistics, the government spends far more money per
patient studying diseases such as multiple sclerosis than it spends on
Parkinsons, even though Parkinsons strikes more people.
And one reason there's a gap has nothing to do with science, some health
analysts will tell you. It's because other disease networks have done a
better
job lobbying Congress and taking their message to the public.
UNKNOWN ANNOUNCER FOR MULTIPLE SCLEROSIS ASSOCIATION: MS is the great
crippler
of young adults. The Multiple Sclerosis Association of America has helped
thousands of patients cope with the effects...
ZWERDLING: The point, some scientists say, is not that one neurological
disease
is more or less important than another. It's just that Parkinsons deserves
more
money, period.
Neurological researchers are convinced that they're close to making
breakthroughs in understanding what causes Parkinsons and how to treat it.
And
they say the faster they crack those mysteries, the faster they'll learn to
fight Alzheimer's and other neurological diseases, because all these
illnesses
share common properties.
And patients like Joan Samuelson decided to take that message to Congress.
Samuelson herself has Parkinsons.
SOUND OF TEA KETTLE WHISTLING
As she makes tea one day in her basement apartment here in Washington, her
left
leg jerks uncontrollably, as though it belongs to someone else's body.
SAMUELSON: I have teas, and I'm kind of big on herbal stuff...
ZWERDLING: When Joan Samuelson learned she had Parkinsons 10 years ago, she
was
37 years-old, working as a corporate lawyer in Los Angeles. Soon her hand
began
shaking so much that she'd sit on it in court.
SAMUELSON: Appearances are so important in law practice, and I'd already gone
through the process of convincing people I was tough as a woman. I'd already
had
clients say: "Are you going to cry in the court room? And: "Are you really as
tough as the other guy?"
And maybe it was in part that -- I had already had enough hurdles to present
myself as a strong macho lawyer. And I couldn't imagine: "Good morning, your
honor. First of all, before I go into my argument, I need to tell you about
my
disease." It just seemed inconceivable.
ZWERDLING: Joan Samuelson quit her job, and partly as a way to overcome her
despair, she began calling Parkinsons groups to ask how she could help them
pressure the government to step up its research.
And she discovered something curious: there were hundreds of Parkinsons
groups
across the country providing victims with emotional support, but hardly
anybody
was doing intensive political lobbying. So Samuelson began raising money to
make
herself a Parkinsons lobbyist.
SOUND OF FOOTSTEPS IN THE CAPITOL
And before long she and other activists began knocking on doors on Capitol
Hill,
trying to convince legislators to pass a Parkinsons research bill, which
would
set up an extensive network of Parkinsons research centers across the
country.
We joined her one day, after the fundraising dinner last spring, in the
hallways
of the U.S. Senate.
SAMUELSON: Hi.
UNIDENTIFIED MALE SENATE STAFFER: Hey.
SAMUELSON: How are ya?
ZWERDLING: It was an audacious campaign, asking legislators to boost funding
on
one disease while they were slashing spending on welfare and the rest of the
budget. But Samuelson says she learned that victims who lobby hardest get
results.
SAMUELSON: When I would make the rounds on Capitol Hill, I would realize that
when I walked in the door it was the first time that a Congressman had ever
had
someone visit him and talk about Parkinsons. And they'd say: "Yeah,
Parkinsons,
um, yeah, that's nerves, right?"
There was no awareness of what the implications of it were. There was a
common
belief that it's a fairly benign disorder. That we pop a pill and the
symptoms
go away. That it's OK.
ZWERDLING: And Parkinsons activists faced other obstacles as they worked they
Congressional corridors over the summer.
For instance, some legislators were convinced that Parkinsons does deserve
more
attention, but they said Congress can't go around passing bills to fund this
disease or that one every time a bunch of victims begins to lobby. It would
turn
the whole thing into a disease-of-the-month club.
But gradually Parkinsons began gaining ground. One of their strongest
supporters
was Democratic Senator Paul Wellstone of Minnesota. Both his parents had
Parkinsons, and when Samuelson dropped by this office one morning, Wellstone
had
good news.
U.S. SENATOR PAUL WELLSTONE (D-MN): I'll just tell you right now: I am quite
prepared to go to the floor with this.
SAMUELSON: That's great. That's great...
ZWERDLING: As Parkinsons activists searched for more supporters, many felt
they
needed something dramatic to make legislators sit up and take notice. They
needed a famous American who has Parkinsons to make it an emotional issue,
the
way former First Lady Betty Ford got the nation to talk about alcohol and
drug
abuse.
And the way actor Christopher Reeve is getting the nation to focus on spinal
injuries now.
TOM BROKAW, NBC NEWS ANCHOR: Congressman Morris Udall, who made the keynote
speech at the Democratic National Convention this past summer, now has
disclosed
that he is suffering from Parkinsons disease.
FORMER U.S. REPRESENTATIVE MORRIS UDALL (D-AZ): My doctor says I've got
another...
ZWERDLING: That's an excerpt from the NBC Nightly News back in 1980. When
Parkinsons activists looked around the country to choose a figurehead for
their
cause, they realized that Morris Udall was perfect, because of what he used
to
be, and because of what he's become.
Before he got sick, Udall was the ultimate activist: a champion for Americans
who didn't have a loud voice, including Native Americans and the poor. He was
one of the best legislators on Capitol Hill. Virtually all his former
colleagues
agree on that: honest, hard- working and funny, even when telling supporters
that he wouldn't run for the presidency in 1984.
UDALL: The day you come to Washington as a U.S. Senator, the assumption is
that
you're a presidential candidate if you're under 65 and not under indictment
or
detoxification.
LAUGHTER
Then I remember that great moment: the flight from Phoenix to Los Angeles,
and
then to Sacramento, for one of the great quadrennial cattle show and
oratorical
contests. Some great wit defined these cattle shows, I think, perhaps it was
I...
LAUGHTER
... who described them as political foreplay, in which one must touch all of
the
erogenous zones in the body politic.
LAUGHTER
ZWERDLING: But since Udall got sick, he's come to represent every Parkinsons
patient's worst nightmare. In the late 1980s, Udall married for a second
time, a
lobbyist named Norma Gilbert.
Norma says she knew Udall had Parkinsons when they began falling in love, but
neither of them expected his health to crumble so fast. Udall started having
trouble dressing himself. He began garbling his words while giving speeches.
SOUND OF AN ELEVATOR
On a recent morning we follow Norma Udall as she visits her husband at the
Veterans Affairs Nursing Home. As we step off the elevator, we pass a cluster
of
elderly patients sitting in a semi- circle in their wheel chairs, getting
gentle
exercise...
SOUND OF PATIENTS IN A HOSPITAL
EXERCISE LEADER FOR WHEEL CHAIR-BOUND ELDERLY PATIENTS: Ready. Follow me.
ZWERDLING: We can see the dome of the U.S. Capitol...
EXERCISE MAN: Number one.
ZWERDLING: ... through the picture window.
EXERCISE MAN: Both hands are moving up now. Bring 'em down slowly.
ZWERDLING: Norma says her husband used to say that he didn't want to become a
poster boy for Parkinsons. He didn't want to fish for sympathy. But after
Udall
lost the ability to speak for himself, his family gave Parkinsons activists
permission to create the ultimate monument to his name.
SOUND OF FOOTSTEPS
They decided to call the legislation they were pushing in Congress the Morris
K.
Udall Parkinsons Research Bill, and hope the memories of Udall on Capitol
Hill
would still be potent enough to help get the bill passed.
Morris Udall's room at the Veterans' Nursing Home is at the end of a long
linoleum hallway. When Norma enters the room, he's in bed, lying on his side,
the way he spends much of his days.
Udall has not walked or talked in six years. He's fed through an intravenous
tube. Udall's doctors say there's no way to know if he comprehends that
President Clinton awarded him the Medal of Freedom a few months ago, the
highest
civilian honor.
SOUND OF TELEVISION
NORMAN GILBERT, SECOND WIFE OF FORMER CONGRESSMAN MORRIS UDALL: Well, good
morning. Good morning, love. Hi Mo. Hi sweetheart. Shall we turn off the
television? Would you like that? Let's lower it, OK?
Do you remember I was here last night and we talked about the award again?
About
the White House award? Medal of Freedom. How exciting it was. People are
still
calling and writing. Everybody's just thrilled for you. And it's so
well-deserved. Cause you're just so good. You're a good man, Mo.
ZWERDLING: Just before Congress adjourned for the elections, the Parkinsons
activists won their biggest and most stunning victory: the Senate unanimously
passed a measure that included most of the key language in the Morris Udall
bill. And then the Parkinsons crusade fizzled. On the other side of the
Capitol,
over in the House of Representatives, anti-abortion forces lobbied against a
provision concerning fetal tissue research and their Congressional allies
blocked the vote.
So when the 104th session of Congress adjourned in October, the Morris K.
Udall
Parkinsons Research Bill died with it.
SOUND OF PEOPLE IN THE CAPITOL
But today there is a brand new Congress, the 105th, and Parkinsons activists,
including legislators like Senator Paul Wellstone, are already plotting how
to
win the extra votes they need to turn their passions into law. Wellstone says
they're going to call on Parkinsons patients back in their home districts to
lobby even harder.
WELLSTONE: And what I'm going to say, in debate on the Senate floor, and what
I'm going to say to my colleagues: it would be callous to not spend at least
a
little bit of dollars in research here. I mean, time, again, is not neutral.
I mean, it's easy for you to sort of put this off. It's not easy for the
people
who are struggling with the illness. And the people who are struggling with
the
illness are going to need to be here again at the Congress. We need to be
tenacious. That's how we turn up the heat, and that's how we pass it. We're
going pass the bill.

ZWERDLING: Parkinsons forces are planning to introduce their new version of th
e
research bill on the floor of Congress toward the end of this month. And even
their critics will tell you that whether they win or lose this time around,
Parkinsons activists have already achieved something remarkable. They've put
Parkinsons disease on the political map.
And for this evening, that's ALL THINGS CONSIDERED.

>From [log in to unmask]
Parkinson's Action  Network
800-850-4726
Headquarters:
818 College Ave., Suite C
Santa Rosa, CA 95404
phone  707-544-1994
fax  707-544-2363
email:  [log in to unmask]

Washington, DC office
601  13th St. NW., Suite 310
Washington, DC 20005
phone    202-628-2079
fax    202-628-2077

Brad Udall, Chair
Joan I. Samuelson, President
John L. Dodge, Treasurer
Bonnie K. Mioduchoski, Administrator
Michael Claeys, Community Coordinator
The Action Reporter is a free publication of the Parkinson's Action Network,
a  non-profit charitable foundation for a cure for Parkinson's.  Use of this
material in other publications is welcomed.  We ask that the Network be
identified as the source of the material, and notified how,  when and where
the material is used.  Simply call 800-850-4726