05/31/2001 - Updated 06:17 PM ET
TV journalist, wife wage war on Parkinson's
By Susan Page, USA TODAY
WASHINGTON — These days only Morton Kondracke can
understand the faint speech of his frail wife, leaning in nose-to-nose
to listen as she struggles to discuss the Parkinson's disease that has
muted her voice and soon might take her life.

How would she describe their 33-year marriage?
"Exciting," Milly Kondracke whispers, her husband repeating the
answer aloud. "Passionate," she says, all but inaudible. He laughs
with delight.

"Friends."
For most of their time as a couple, Mort Kondracke has been the one
in the spotlight: as a newspaper columnist, Washington bureau chief,
magazine editor and TV pundit — one of the original panelists on the
bombastic syndicated McLaughlin Group and now co-host of Fox
TV's Beltway Boys.

He covered politics and questioned presidents; she worked as a
psychotherapist and bore the brunt of rearing their two daughters,
now grown, as he focused on his career.

But their lives have been transformed and their roles in some ways
reversed since the moment when she remarked in 1987 that she was
having trouble writing the letter "K" on a check for their daughter
Andrea's college application.

Since then — after the process of getting the diagnosis of
Parkinson's and then accepting it — Mort and Milly Kondracke
have become soldiers in the political disease war. The battle for
attention and funding at times pitches one disease against
another, prompting arguments about who is worthier and
calculations of the wide disparities in how many federal research
dollars are allocated per patient.

As it turns out, the politics of fighting disease requires the same sort
of coalition building and lobbying that marks, say, the politics of
building highways. And having a celebrity who personifies the cause
can make all the difference.

Which means the announcement in late 1998 by actor Michael J. Fox
that he had been diagnosed with Parkinson's was tragic news for him
but a ray of hope for those pushing for a cure. The degenerative
neurological disorder affects about 1 million Americans in middle
age or older. It causes uncontrollable tremors and muscular rigidity.
The symptoms can be treated for some by drugs or surgery, but
there is no cure.

"Muhammad Ali has Parkinson's, and he's done a lot, but he can't
speak," Mort Kondracke says. Other big names with the ailment,
Pope John Paul II and Clinton administration attorney general
Janet Reno among them, weren't active in the campaign for more
funding. "Parkinson's lacked for celebrity," Kondracke says. "I knew
the minute Michael J. Fox announced that he had Parkinson's:
Aha, this is it."

Becoming an activist
Fox's boyish good lucks and earnest manner made him an engaging
character in the Back to the Future movies and the TV series
Spin City and Family Ties. Before the annual dinner of the
Parkinson's Action Network last week, he seemed much like the
roles he's played, greeting Milly warmly and congratulating Mort
on his book, Saving Milly: Love, Politics, and Parkinson's Disease,
being published Friday.

"You're not the only one who can write a book," teased Fox, whose
own book is to be published in January. "College. Journalist," he
said, pointing to Kondracke. "Bum," he said, pointing to himself
and grinning.

His wife, actress Tracy Pollan, joined in the laughter.

Later, at the dinner, Fox ribbed ABC correspondent Sam Donaldson,
the master of ceremonies, for mistakenly showing up in black tie;
the other men are in business suits. "Sam, sorry about that," Fox
says from the dais, explaining to the crowd, "I saw him earlier and I
asked him for a drink" on the assumption that he was a waiter.

But the toll that Parkinson's has taken on Fox's body, if not his good
humor, was unmistakable. He jammed his hands in his pockets but
tremors shook his left arm. His right leg rocked to its own rhythm.

Fox is a hero to many in the Parkinson's community because he has
adopted the cause as his own, testifying before Congress and starting
the Michael J. Fox Foundation for Parkinson's Research.

For Kondracke, the decision to become an activist caused
considerable angst. Friends say he agonized over what a journalist
appropriately could do on behalf of any cause, however laudable.

Eventually, he began to urge more funding for medical research
in his column in the Capitol Hill newspaper Roll Call. He set up
meetings with members of Congress for Milly and Joan Samuelson,
founder of the Parkinson's Action Network. He carried a list that
showed the National Institutes of Health at the time was spending
an average of $1,000 a year on research for each person with
HIV/AIDS, $260 for each cancer patient, $54 for each person with
Alzheimer's disease and $26 per head for Parkinson's.

He chaired America's Campaign for Medical Breakthroughs, a group
that supported doubling funding for the National Institutes of Health
to increase research into many diseases. But his direct lobbying
ended when officials at the Senate Periodical Gallery warned he
would lose his congressional press credentials if he continued.

With presidents, he has been uncharacteristically inarticulate.
In 1993, he and Milly attended the White House Christmas party
for the press to make the case for more funding when they shook
hands with President Clinton and Hillary Rodham Clinton in the
receiving line. Milly rehearsed what she would say: "Mr. President,
I want you to know I have Parkinson's disease, and I hope you'll
increase the research fund."

When their turn came, however, Milly lost her train of thought and
looked to Mort for help. He blurted out: "Increase brain research!"
The moment of opportunity was gone.

During last year's campaign, Kondracke approached candidate
George W. Bush in New Hampshire. "Can I talk to you about my
favorite cause?" Kondracke asked. "Yeah," Bush said. Kondracke
said, "Doubling the NIH budget."

Bush replied, "I'm for it." Trying to make a pitch for Parkinson's,
Kondracke added, "Think brain!" Bush looked puzzled. "Brain
cancer?" he asked. "No, no," Kondracke hurriedly responded.
"Neurological diseases."

A love story
Kondracke, 62, says he wrote his book as a love story.

"I wanted to tell the world about Milly," he says. "Milly transformed
my life." They met on a blind date, dated for a while, then broke up.
She wanted to get married. He was reluctant.

To him, she seemed so exotic: the half-Mexican, half-Jewish daughter
of two communists. Her mother suffered a nervous breakdown and ran
away when Milly was 3 years old. Her father, a union organizer, was
disabled by a stroke when she was 8, deported to Mexico when she
was 10 and died a few days later of a heart attack. Milly and her sister
were raised by a family friend in Chicago, an activist in the Mexican
community with six children of her own.

"I had it in my head if I wanted to be in the Washington bureau of
The New York Times, I was supposed to marry some Supreme Court
justice's granddaughter or daughter, or for sure some Vassarite,"
recalls Kondracke, then a reporter with the Chicago Sun-Times.
"Eventually I was madly in love with her, but I couldn't marry her
because she didn't fit in with this stupid life's plan I had for myself."

Finally, he says, he realized he'd be "bereft for life" without her.
Since then, they've had a close but tumultuous marriage.
They would fight over her tendency to issue open invitations to
friends and relatives who sometimes would stay on for months
or years; he wanted peace and quiet. She spent freely; he wanted
to save.

They raised two daughters: Alexandra, 31, a filmmaker in New York,
and Andrea, 30, who graduated from Johns Hopkins Medical
School last week.

"Milly was the master of all she surveyed," Mort says, an arm around
his wife's stooped shoulders in the apartment they moved to when
she no longer could negotiate their house in the suburbs. When their
daughters approached adolescence, Milly organized the
neighborhood's parents into an information-sharing network to help
manage their children's teenage years. She battled the school district
to get special help for Andrea, who has dyslexia. She poured her
husband's bottles of gin down the drain and convinced him he had
a drinking problem; he finally joined Alcoholics Anonymous.

All that has made the limitations Milly faces at age 61 even more
striking to her friends and family.

Some people with Parkinson's successfully control their symptoms
for years, and Milly for a time was helped by the drug L-dopa. But
it gradually lost its effectiveness, and two experimental brain
surgeries failed to improve her condition. The Kondrackes pursued
alternative treatments, consulting an herbal therapist in Chicago's
Chinatown and a woman in Milan, Italy, who massaged victims of
paralysis.

Now Milly's body is twisted in the wheelchair she must use. She
has trouble swallowing; her food must be cut up in tiny pieces
and mashed before she can eat it.

Since his wife became ill, Mort Kondracke says his Christian
faith has deepened and he has become a better person, one with
a sense of mission.

  "I feel that I can't live without God's help," he says, "and
several times I've said, 'OK, God, what am I doing here?' And the
message I always get is, 'Take care of Milly.' "

But Parkinson's has undermined her faith. "Milly feels abandoned
by God, right?" he asks her. "Yes," she says. They have discussed
whether she will have a feeding tube installed when and if swallowing
becomes   impossible. "If she decided not to have a feeding tube,
she basically would starve herself and go to a hospice," Kondracke
says. "But the last time we talked about this, which was a couple
weeks ago, she said she would get a feeding tube.

The last word was 'yes,' thank God, because at one point she said
'no.' Right? Milly?"

Her nod is almost imperceptible.

What does she think is ahead?
Milly taps out the answer on the keyboard of a laptop computer
that is equipped to speak words aloud when she finishes. She
types five letters: d-e-a-t-h. A shadow crosses her husband's face.

In the quiet apartment, she painstakingly taps out more words,
then pushes the bar that prompts the computer's robotic voice
to read them: "There is nothing more to say."

http://www.usatoday.com/news/healthscience/health/2001-05-31-parkinsons-kondracke.htm

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