Reno Discusses Her Struggle with Parkinson's

WASHINGTON -- As an advocate for people with Parkinson's disease, Joan Samuelson has
>pounded on many a Capitol Hill door trying to increase financing for research into the incurable disorder. In August 1996, she found herself with a rare opportunity to make her pitch to a member of the Clinton Cabinet: Attorney General Janet Reno, a fellow Parkinson's sufferer.

But any illusion the advocate may have had about enlisting the nation's highest law-
>enforcement officer in her cause was quickly dispelled. "She didn't feel she should make Parkinson's a part of her public agenda," Ms. Samuelson said.

Today, three years later, Ms. Reno has little choice. The characteristic tremors of her hands and arms have worsened in recent months, making Parkinson's a part of her public persona, if not her agenda. As if being caught in the crossfire between Congressional Republicans and a Democratic President was not stressful enough, she must now contend with questions about her health, and speculation that she will resign before the end of President Clinton's second term.

She insists she will not. Her neurologist, Dr. William J. Weiner of the University of Miami, says her disease is still in the early stages; both he and independent experts say there is no reason at this point why Ms. Reno cannot work.

"There is nothing about Parkinson's that precludes working," said Dr. Curtis Freed, a
>well-known Parkinson's expert at the University of Colorado. "It is strictly between the person and their employer."

Ms. Reno, the nation's first female Attorney General, has held the job longer than any of her predecessors this century. With her blunt words and image as a Washington outsider, she is a favorite with voters beyond the Beltway, and she has long been admired by female lawyers as a role model.

Now, at age 61, the woman who is sworn to enforce the Americans With Disabilities Act has herself become a symbol for the disabled, particularly those with Parkinson's disease. The degenerative neurological condition afflicts one million Americans, many of whom remain "in the closet," in Ms. Samuelson's words, because they worry that they will lose their jobs, or that people will think them incompetent.

The actor Michael J. Fox kept his Parkinson's diagnosis a secret for seven years before
>disclosing it last year. Doctors and journalists suspected for months that Pope John Paul II had Parkinson's, but Vatican officials did not confirm it until October 1996, partly because they feared that his ability to lead the Roman Catholic Church would be questioned.

Ms. Reno, by contrast, announced her illness on Nov. 16, 1995, at a press briefing televised on C-Span, three weeks after she received the diagnosis. At the time, the symptoms were confined to the left side of her body; now both sides are involved. Yet, as the disease has progressed, the Attorney General has adopted none of the usual tricks -- clutching a pen, stuffing her hands in her pockets -- that others may employ to minimize its visibility.

"Janet handles this disease the way she handles everything else: open, upfront, straightforward," said Donna E. Shalala, the Secretary of Health and Human Services and one of Ms. Reno's closest friends in the Clinton Administration. "She hides nothing." Other patients and doctors say she is shattering myths, not by talking about
>the disease -- she rarely does -- but simply by living with it.

"There is a tremendous amount of prejudice associated with having a neurologic disease;
>people think if your hand shakes, you can't think," said Dr. Weiner, who has treated the Attorney General for the past three years. "She didn't volunteer for it, but she is doing a service to the Parkinson's community to be out there working, to be out in
>the open about it."

Earlier this week, while speaking to the American Bar Association's House of Delegates
>at the group's annual convention in Atlanta, Ms. Reno's body gave her little relief. She spoke in the slow, deliberate cadence that is her trademark. But her hands spoke at their own pace. Her left arm bobbed up and down during the 20-minute address, while the fingers on her right hand fiddled with the air.

"I think she is very brave," said G. Robert Witmer Jr., a lawyer from Rochester. "I think it actually enhances the delivery of her message to see someone who is coping with a physical disability and not letting it deter her from her job."

The details of how Ms. Reno copes remain largely a private matter. Although she permitted her doctor to be interviewed, she has repeatedly declined to discuss her illness in detail, telling reporters with questions to show up at her weekly briefing and ask them. On June 18, one did. "It doesn't bother me," she said then. "And if you all will just get used to it, it won't bother you."

Dr. Weiner said that while Ms. Reno's tremors have indeed grown worse, the more troubling symptom is one the public does not see, the occasional stiffness she experiences while walking. Even so, the doctor said, when he last examined the Attorney General on July 19, "she was doing well."

"She was quite enthusiastic," Dr. Weiner said. "She had been mountain climbing in California and swimming in the ocean here in Florida. She felt she had done well at that, and she was quite proud of herself."

This has been Ms. Reno's image throughout her tenure in Washington: the active, energetic nature lover, and friends and aides say she seems determined not to let illness get in the way. She took her staff out kayaking on the Potomac a couple of weeks ago, and she still sticks to what Deputy Attorney General Eric Holder described as a "punishing" schedule, making day trips to cities like Chicago and Cleveland that begin at 5 o'clock in the morning so she can return to work in Washington later the same afternoon.

Parkinson's disease impairs its victims by killing the brain cells that produce dopamine, a neurochemical that controls motor function. The primary symptoms, at the outset, are stiffness and tremors, but patients eventually lose all motor control.

The disease progresses at different rates in different people, and there is no way to predict how quickly Ms. Reno's condition will deteriorate. About one-quarter to one-third of all patients have cognitive impairment, but Dr. Weiner says there is no evidence of this in Ms. Reno.

Neurologists assess Parkinson's patients according to five stages. Ms. Reno is in the
second stage, Dr. Weiner said, which means she has stiffness and tremors on both sides of her body but is not yet losing her balance or having trouble with other daily activities. Last year, while attending a service at a Maryland church, Ms. Reno fainted, but Dr. Weiner said the episode was unrelated to her disease.

There are a handful of drugs for Parkinson's, but they treat only the symptoms and there is considerable debate among doctors about how much medication patients should take, and what kind. Ms. Reno takes a relatively small amount: two milligrams per day of pramipexole, a drug that mimics the action of dopamine in the brain. It is not enough to control her symptoms completely, but Dr. Weiner said complete control was not necessary, so long as the patient was comfortable and could function.

"Who are we treating?" he asked. "The patient, or the people who have to look at the patient?"

Eventually, the Parkinson's drugs stop working, which is one reason advocates like Ms. Samuelson are so eager for better treatments, if not a cure.

In an interview earlier this year, Ms. Samuelson spoke eloquently of her own frightening future: "I have watched fellow advocates and friends, people I loved, die the living death which is end-stage Parkinson's, where you are a prisoner of your body, unable to participate in the world, unable to move, unable to speak, unable to swallow."

Those close to Ms. Reno say she has read up on the disease and understands the prognosis. But if she has any anxiety, or moments of sadness or self-pity, they say, she does not reveal them. "She has just gone on," said her younger sister, Maggy Hurchalla. "I think the most striking thing she has done is not worry about people worrying about
her."


By SHERYL GAY STOLBERG
NYT_BYLINE
<http://www.nytimes.com/yr/mo/day/news/washpol/reno-parkinsons.html>

janet paterson
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