continued from part 2 ...

The object of the Parkinson's movement's post-Udall lobbying was to get
Congress to actually appropriate $100 million for Parkinson's research --
or to write language as close to a directive earmark as we could persuade
congressional leaders to accept. Other diseases kept getting them.

One year Gingrich and then-White House Chief of Staff Erskine Bowles, whose
child suffers from juvenile diabetes, quietly put an extra $300 million for
diabetes research into a final budget agreement.

Another year Ted Stevens (R-Alaska), chairman of the Senate Appropriations
Committee, became irritated that prostate cancer was getting less attention
than breast cancer and added $50 million for that.

In truth, Parkinson's also benefited from inside action when Rep. Joe
McDade (R-Pa.), a member of the House Appropriations Committee who has
since retired, was diagnosed with Parkinson's in 1996 and created a $25
million fund for neurotoxin disease research in the Defense Department.

In 1998, in an effort to get a $100 million earmark for Parkinson's in the
NIH budget, I went with Samuelson to talk to McCain.

We met McCain in an ornate room just off the Senate floor. He listened as
we explained that NIH, despite the Udall bill, was refusing to
significantly increase Parkinson's funding and probably would not do so
without a command from Congress. Would he co-sponsor a floor amendment with
Wellstone to write $100 million into the Labor-HHS appropriations bill?
McCain became irate.

"This is earmarking," he said. "This is pork. I have spent my entire
congressional career fighting this sort of thing. If you're looking for
somebody to do this, I'm not your guy."

Running for the Republican presidential nomination in 2000 and eager to
retain the support of abortion opponents, McCain later apologized for his
vote lifting the ban on fetal tissue research and came out against federal
funding of highly promising research using stem cells derived from leftover
embryos at fertilization clinics.

On January 31, 2000, the day before George W. Bush lost the New Hampshire
primary to John McCain, I slipped into a makeup room at Manchester TV
station WMUR, where Bush was cleaning his face after a Fox News appearance.
He knew who I was because I'd interviewed him for a profile in Reader's
Digest the year before.

I said, "Can I write you a letter about my favorite cause?" "What cause is
that?" he asked. "Doubling the NIH budget," I started. "It's . . ."

"I'm for it," he said. "I've talked to Connie Mack about it. I told him I'm
for it. It's the right thing to do."

I said, just as inarticulately as I'd done at the Clintons' Christmas
party, "Think brains." "Brain cancer?" he asked. "No, neurology," I said. I
made a botch of my speech. "Great things are happening," I said.
"Neurodegenerative factors . . . No, I mean, something called neural growth
factors . . . Great implications for Alzheimer's, ALS [amyotrophic lateral
sclerosis], stroke, Parkinson's. Great things are happening . . ."

I finished with my favorite political argument for Republicans:
"Republicans in Congress have been increasing NIH by 15 percent a year,
ramping up to double. They never take credit for it."

"They don't know what they are doing," Bush said.

"Al Gore only wants to double the cancer budget, not the whole," I
volunteered, hoping he'd try to trump Gore and make doubling the NIH budget
a centerpiece of his campaign.

"No," Bush said, "I'm for doubling the whole -- what, over 10 years?"

"No," I said, "five. They can do it over five. NIH can absorb it over five."

"Okay, I'm for it."

Besides writing columns, I kept nagging Bush's political and issues staff
to get the candidate to make a major speech proposing a doubling of funding
for medical research.

In September 2000, Bush came out with a rousing statement: "As president, I
will fund and lead a medical moonshot to reach far beyond what seems
possible today and discover new cures for age-old afflictions . . . Our
government will promote medical advances with new resources and new resolve."

Bush's campaign staff produced a position paper that was thorough and
sophisticated about the hopes that medical research might fulfill
reasonably soon, including gene therapies for cystic fibrosis, Huntington's
disease and some forms of deafness, and new drugs that strangle the blood
vessels that feed tumors.

The language on Parkinson's was pure music: "The world's leading
neuroscientists have declared that Parkinson's can be cured within 10 years
-- and what's learned in the process can help cure Alzheimer's,
Huntington's and other neurodegenerative diseases."

Bush promised to finish the job that Sens. Mark Hatfield, Arlen Specter
(R-Pa.) and Tom Harkin (D-Iowa) and Rep. John Porter (R-Ill.) had started
in fiscal 1998, doubling the NIH budget to $27.5 billion by fiscal 2003. He
promised to increase spending over 10 years by $67 billion. Even though his
September speech was eloquent, the message was never repeated in the
campaign, indicating it was not a core part of his program. And he didn't
promise to redouble the research budget in the five years after 2003. The
$67 billion he campaigned on would not pay for redoubling over 10 years.

In January 2000 Michael J. Fox announced that he was leaving his TV show,
"Spin City," to devote himself to conquering Parkinson's. This produced a
huge burst of publicity -- and an invitation from Hillary Clinton to sit in
her box when President Clinton delivered his State of the Union message on
January 27.

I was sitting in Chicago's O'Hare Airport en route from the Iowa
presidential caucuses. My cell phone rang. It was Fox. He said he was
inclined to turn down Hillary's invitation. It would look like an
endorsement of her senatorial candidacy, he said.

I was a little startled, but in an instant I realized that he had shrewd
judgment. I said, "You are absolutely right. All you'll get out of it is
five minutes of face time with Hillary, if that. She'll promise you
something for Parkinson's, but she'll lie just like Clinton did to
Christopher Reeve. You'll just get used."

(Reeve had visited the White House and was promised $10 million extra for
spinal cord injury research. But it never materialized.)

Without accepting my invidious analysis, Fox skipped the State of the Union.

In the fall, just before the 2000 election, Fox wrote an op-ed column in
the New York Times pointing out the differences between George Bush and Al
Gore on the issue of embryonic stem cell research -- Bush remained against
it,

Gore was for it -- and urging that the research be allowed to continue in
order to save lives.

When Bush became president, he hinted that he might issue an executive
order banning federal money for stem cell research.

As it turned out, Bush had heard from numerous disease advocates --
including Sen. Connie Mack (R-Fla.) -- urging him not to stop the research.
And he did not, ordering a study of the issue instead. The issue is still
pending.

Fox wants to tell President Bush that he could be the president who
presides over the conquest of Parkinson's. The request for a meeting is
also still pending.

Ever since Milly was diagnosed with Parkinson's, the nation's leading
neurologists have been saying that this disease could be cured within 10
years. They still say that, but Milly's time is running out.

She is confined to a wheelchair. It's progressively harder for her to eat
solid foods. Four times, I have had to perform the Heimlich maneuver to
prevent her from choking to death. Often she has trouble even drawing
liquids up through a straw. She can barely speak. Her voice has no volume
and she has difficulty forming intelligible words.

Her mind, however, is sharp. We communicate mainly through portable
computer, though she has difficulty punching the right keys. She is
inexorably becoming a prisoner trapped in her own body.

I do not know how our love story will end, or when. Some days, she says she
does not want to live like this any longer and, when the time comes, will
refuse a feeding tube and starve herself to death at a hospice.

Other times, she says she will agree to have a tube implanted in her
stomach -- reserving the right, however, to have it removed when she feels
utterly trapped and life becomes intolerable.

I pray every day that a medical miracle will save her. But it does not seem
to be forthcoming. I am losing Milly.

But when I lose her, if I lose her, our story will not end. Memory will
survive. I remember the restaurant where we first met, the raincoat she was
wearing the moment I knew I had fallen in love with her, the soft couch
where we first made love, the smell and taste of her that I became addicted
to for life.

And 33 years of marriage -- our fighting, our children, her steel, her
generosity. Her courage. I will keep working to end Parkinson's disease on
her behalf, and I will hug her in my heart forever.

Morton Kondracke is the executive editor of Roll Call, a commentator on the
Fox News Channel and co-host of Fox's weekly political show "The Beltway
Boys."

By Morton Kondracke
2001 The Washington Post Company
http://www.washingtonpost.com/ac2/wp-dyn/A99372-2001May30?language=printer .
http://washingtonpost.com/ac2/wp-dyn/A8817-2001Jun1?language=printer .


janet paterson: an akinetic rigid subtype, albeit perky, parky .
pd: 54/41/37 cd: 54/44/43 tel: 613 256 8340 email: [log in to unmask] .
snail mail: 375 Country Street, Apt 301, Almonte, Ontario, Canada, K0A 1A0 .
a new voice: the nnnewsletter: http://groups.yahoo.com/group/janet313/ .
a new voice: the wwweb site: http://www.geocities.com/janet313/ .

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