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A Cure for Milly

Sunday, June 3, 2001 - "Marry Milly!" Joan Kehoe whispered in my ear. Then
she repeated it, more insistently. We were at an Italian restaurant,
Riccardo's, the favorite martini-lunch spot for reporters at the Chicago
Sun-Times in the 1960s. Joan had introduced me to Millicent Martinez a few
months before. Milly was sitting out of earshot as Joan importuned me. She
also couldn't see the quizzical look on my face, which betrayed what was in
my mind: Marry Milly? Out of the question.

Not that I didn't like her. I did. She was pretty. She was self-assured.
And she was exotic, half-Mexican and half-Jewish. But she did not fit my
life's plan, which was to become a big-shot Washington journalist. I
figured that the person I planned to be someday should have a Vassar or
Wellesley graduate for a wife, or possibly an heiress -- a woman whose
family connections and intellectually stimulating company could help me
attain the goal.

Eventually Milly overwhelmed this stupid idea and I realized that, wherever
I went in life, I would regret it the whole way if she were not with me. So
ultimately I followed Joan's advice.

We got married on October 7, 1967. We wrote our own wedding ceremony,
praying for peace in the world and justice in America and also pledging in
the traditional way that we would be there for each other in sickness and
in health. Two photographers from the Sun-Times took different wedding
pictures of us at separate moments leaving the church and walking to our
reception.

Both show Milly and me laughing, in a state of pure joy. I felt utterly
confident that I had made the best decision of my life. I have never for a
moment regretted it, in health or in sickness.

In fact, for 33 years we've lived a love story -- but of one kind for the
first 20 and a very different kind for the last 13, after Parkinson's
disease invaded our lives. We moved to Washington in 1968, and Milly
developed into a dynamo -- a gifted psychotherapist, a strong mother to our
two daughters, a wise neighbor and generous friend, and a formidable
companion to me. We were bonded, almost welded.

In 1987, the first shadow of Parkinson's disease cast itself upon our
lives. Milly was writing a check and remarked that she could not form the
letter "K" correctly. She got a piece of paper and wrote her signature four
or five more times, then more times, and said her handwriting just wasn't
right. I saw no difference. Anyway, I thought Milly was both vain and
perfectionist about her clear penmanship. Whatever was wrong -- if anything
was wrong -- was in her imagination or was being exaggerated, I figured.

That May, Milly made an appointment to see her old boss at the Neurology
Center in Bethesda, Marvin Korengold. In fact, after getting her master's
degree in social work at Catholic University, Milly had counseled patients
at the center for a few years. She'd brought home harrowing stories about
people stricken with Alzheimer's disease, epilepsy and particularly
Parkinson's. Korengold, a neurologist, examined Milly and diagnosed ulnar
neuropathy, a nerve inflamed from pressure at the elbow.

He told her to try to keep her arms straight and avoid leaning on the
elbow. Milly reported these findings to me with relief that the problem was
not serious. But, even though she followed instructions, her symptoms did
not go away.

On a follow-up visit in June, Korengold had her swing her arms and noticed
that the right did not move as smoothly as the left. He prescribed
Symmetrel, which Milly took believing it was meant to help her nerve
problem. He did not tell her what it was actually for, evidently not
wanting to scare her. She went back to see Korengold a few times during the
summer because her right little finger remained weak and she began to
notice a slight tremor in her right foot when she pressed the accelerator
or brake while driving.

One day in September she called me at work in tears, with a panic in her
voice that I'd never heard before.

"Something terrible has happened," she said. "You've got to come home." I
had a fleeting terror that one of the girls had been injured or killed. She
said, "I looked up the medicine Korengold gave me in my pill book.
Symmetrel is for Parkinson's disease!" I was relieved that this was not the
worst possible news, but for Milly it was. "I know what Parkinson's is.
I've seen people with it," she cried. "It's a horrible disease, People
shake. They can't walk. They choke on their food. It can't be that!"

I drove home as soon as I could and found Milly utterly distraught. This
was the first time in our lives together that I had ever seen Milly out of
control. She said that if she did have Parkinson's it meant that she would
have to give up her psychotherapy practice because clients would not want
to be treated by someone "so pathetic." She predicted, "You won't keep
loving me. You'll leave me. You don't know what Parkinson's does to people.
You'll have to take me to the bathroom. You'll have to feed me. You won't
want to do that."

I said rather automatically that I didn't care what happened, I'd never
leave her. I meant this, too, although she was correct: I knew nothing
about Parkinson's or the extreme disabilities it could cause. And, of
course, her problems then were so mild that her grim predictions seemed
speculative and extreme.

For five years, as is usual with Parkinson's patients, a medicine called
Sinemet worked to keep her tremor and stiffness under control. But
gradually, as is usual, it stopped working. She began to experience severe
leg cramps. She sometimes froze in a chair, unable to move. Worst of all,
she began to lose her sense of balance. She fell often, and we became
regular visitors to the emergency room at Suburban Hospital, where she
received stitches in her lips, forehead and chin.

In 1994, as Milly's condition continued to worsen, we began looking at
drastic surgical therapies to relieve the symptoms. Basically, two were
available -- a fetal cell transplant and a pallidotomy. I read a lot about
both. Milly and I met up with Joan Samuelson, president of the Parkinson's
Action Network, who got us involved in advocacy and lobbying for increased
federal funding of Parkinson's research. Samuelson, a Parkinson's patient
herself, put us in touch with some of the top neurologists in the country,
whom I called for advice about what we should do next for Milly.

They told me that, theoretically, a fetal transplant would be the most
advisable thing for a direct hit at Milly's Parkinson's. The procedure,
made controversial by opposition from the antiabortion movement, involves
injecting dopamine-producing cells from aborted fetuses into the brain of a
Parkinson's victim to replace those that have died. At the time we were
considering the operation, federally sponsored research trials were just
beginning because President Clinton, as one of his first acts, had lifted a
ban imposed by the Reagan and Bush administrations.

A few doctors were performing the operation without federal sponsorship,
notably a surgeon in California who was reporting dramatic results. But the
researchers I talked to warned me away from him, saying that he was not
publishing any scholarly findings and stories were circulating about
botched operations and brain damage.

The experts I consulted also said that their review of results from Europe
and elsewhere indicated that while fetal transplantation was a promising
area of research, there were significant problems keeping cells alive after
they were transferred. They advised looking seriously into pallidotomy
instead.

A doctor named Mahlon DeLong had been studying this daylong surgical
procedure in which the patient is awake throughout, helping to guide
doctors to the targets they would be trying to hit deep in the brain to
slow the misfiring of hyperactive nerve cells. DeLong had been Milly's
neurologist at Johns Hopkins University in Baltimore before moving to Emory
University in Atlanta. He warned there was potential danger to a
pallidotomy, but Milly begged him to perform the surgery.

"I can't stand to live this way anymore," she said. "I'd rather die." He
agreed to do it.

The first indications were good. When Milly was able to get out of bed
after the surgery, she and I danced briefly around the room. Her balance
wasn't perfect, but it seemed improved, and I thought she moved less
haltingly than before the surgery. But the old pattern resumed: Some days,
she could walk around the house safely by herself or using a walker. Other
times, at home and away, she collapsed forward or to the side and was
unable to break her fall. The emergency room visits recurred, and the
stitches.

One day when our daughter Andrea was home from medical school, Milly had
almost reached the bottom of the stairs when she suddenly fell forward,
hitting her head on a wall. We put our three-story house on the market and
signed a contract on a one-story rambler.

There was no longer much hope that Milly could avoid being rendered a
permanent invalid by Parkinson's.

Inside and out, the White House fairly shimmers with light at
Christmastime. And so it did on December 15, 1993, when Milly and I made
our first foray into politics as a way of saving her from Parkinson's disease.

By the time Bill and Hillary Clinton's Christmas invitation arrived, I was
beginning to understand disease politics. My eyes were first opened earlier
in 1993 by literature that Jill Schuker, Milly's best friend, sent to us
from the Parkinson's Action Network. It pointed out that Parkinson's
research was deeply underfunded by the federal government in comparison
with other diseases. The minute I read it, I felt that I'd let Milly down
by not taking action earlier. I knew I had to do something, but I didn't
know what.

I had a twice-weekly column in Roll Call, a newspaper read by practically
everyone on Capitol Hill, but at first it struck me that using my position
to campaign for more Parkinson's money constituted unethical special pleading.

But in July of that year I decided I could write something if I disclosed
my personal interest. I phoned Joan Samuelson, whom I hadn't yet met.

On the basis of the interview, I wrote a column saying that President
Clinton had given a gift of hope to victims of Parkinson's, Alzheimer's
disease, diabetes and prenatal disorders by lifting the ban that Presidents
Reagan and Bush had imposed on federal funding of fetal tissue research.

But, I wrote, Clinton then "dashed that hope by cutting the funding" for
research -- $9 million from the budget of the National Institute of
Neurological Disorders and Stroke and $4 million from the National
Institute on Aging.

I quoted Samuelson as saying that Parkinson's and Alzheimer's research were
"sacrificial lambs to pay for cures for AIDS and cancer while trying to
reduce the deficit."

Indeed, in his first budget as president in 1993 Clinton had asked for $225
million more for AIDS research, to bring the total to $1.3 billion, and
$130 million more for cancer, for a total of $2.1 billion.

According to what came to be known as Samuelson's "disparity chart," NIH
then was spending an average of $1,000 a year on research to help each of
the nation's 1.3 million HIV/AIDS victims. For each of 8 million cancer
victims, NIH spent $260, while 4 million Alzheimer's patients got just $54
each, and 1 million Parkinson's victims $26 each.

In this column I said that "a close relative of mine" had Parkinson's.

continued in part 2 ...
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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