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The Parkinson’s question
By WES ALLISON
© St. Petersburg Times, CLEARWATER -- The topic was domestic violence, a favorite of Janet Reno's, and more than 200 police and social workers sat rapt last week as she detailed the approaches she has taken over the years. Her voice was firm and steady, but her hands at times acted on their own, bouncing at her sides, thumping the lectern, shaking back and forth as she held them out to make a point.
But as she nears a decision on whether to seek the Democratic nomination for governor of Florida, the question is coming up: How would her disease hamper her ability to run a vigorous campaign against Republican Gov. Jeb Bush? And, if she wins, would it affect her ability to serve a four-year term or two? Even Reno fans in the Democratic Party worry about this. But interviews with her doctors, independent Parkinson's experts, and former staffers at the Justice Department suggest they shouldn't: Despite the tremors, the disease has left Reno's stamina and intellect intact. "I'm trying to address it. My real concern is: Would it have any adverse effect on my being governor? The doctors say no. I don't feel any adverse effect. I didn't feel it on my abilities as attorney general or what I'm doing now," Reno, who turned 63 on Saturday, told the St. Petersburg Times last week. "In response to the politics of it, people have to look at what the person does or says and judge accordingly." Reno, a Miami native, left Washington in January after serving eight years as attorney general under President Bill Clinton. She plans to decide whether to run for governor "in the next month or so," and at least by mid September. Reno authorized her doctors to speak with the Times in detail about her condition. She also plans to release her medical records if she runs. Parkinson's is a progressive brain disorder that worsens with time, and Reno's condition has slowly declined since she was diagnosed in November 1995. The tremors have moved from her left arm to both arms and have become more frequent, but she and her doctors say it has not forced her to change how she lives. She takes two medications daily and suffers from no significant side effects, her doctors said. At worst, Parkinson's robs its victims of their physical control and some mental acuity in seven to 10 years. At best, it progresses slowly, having little effect on daily activities for 15 years or so. Reno's doctors acknowledge it's impossible to know what the next few years will bring. Experts say the best predictor of the future for Parkinson's patients is the past, and Reno has had a relatively mild form. She rambles South Florida in her red pickup and takes frequent kayaking and hiking trips. "There's a tremendous variation in what happens to people, and currently there's no test that can predict what's going to happen to anybody," said Reno's lead physician, Dr. William Weiner, director of the Maryland Parkinson's Center and professor of neurology at the University of Maryland. "Someone like her comes to me six years into the disease and I say, "This is good. You're going to have progression, but it's probably going to be slow like in the past.' " Reno's other neurologist, Dr. William Koller, director of the Movement Disorder Clinic at the University of Miami, said she responds well to medication and is quite healthy. He and Weiner said they do not doubt her ability to run and serve. "We always tell the patient, one, they need to stay active, and minimize the effect of the disease. When they're engaged and have goals, they just do better in general," Koller said. "The other thing is people know when they're too tired, or it's time for some rest. You can push yourself, but not too far. "She has a lot of energy and a lot of common sense. I think she knows when it's time to rest." If she runs, she'll join a lively field of Democratic contenders. Pete Peterson, a former U.S. representative from Marianna, near Tallahassee, resigned as ambassador to Vietnam to consider running, then hinted last week that he would. House Minority Leader Lois Frankel of West Palm Beach, state Sen. Daryl Jones of Miami and Tampa lawyer Bill McBride have declared their candidacies. U.S. Rep. Jim Davis of Tampa is pondering it. Democrats say Reno's health is bound to be an issue. Although none has publicly questioned her fitness for office, party activists are talking about it. "Of course, they're worried about it. It's like Cheney's health -- people are concerned about that, too," said Myrtle Smith-Carroll, a former member of the Democratic National Committee from St. Petersburg, referring to Vice President Dick Cheney's heart problems. Reno has made public appearances in several Florida cities in recent weeks and says people frequently inquire about her health, but she expects voters to get past the tremors. "They ask me how I feel, and how the Parkinson's is doing, and I say this hand shakes, and this hand has trouble writing sometimes, but today it's good," Reno said. "And they say they had an uncle, or they knew somebody (with Parkinson's), or some days they give me a description of somebody who lived a long and full life, and other times (when it was) debilitating." * * * Parkinson's is incurable and its cause is unknown. Surgery can alleviate symptoms, but they recur. Researchers have tried inserting stem cells into the brains of Parkinson's patients, in hopes those cells would replace the dying ones, but results have been mixed. It generally does not run in families, but one of Reno's two younger brothers, Mark, 59, who often accompanies her on campaign trips, was diagnosed with it this year. Both gave blood samples for a major National Institutes of Health study of siblings with Parkinson's aimed at finding genetic causes. Reno was diagnosed in November 1995. Typically, patients respond well to medication for the first five to seven years. From seven to 12 years, "they begin to find that their response to one of the major medications . . . gets shorter and shorter. Slowness, stiffness and tremors come back sooner on the drug," said Dr. Robert Hauser, director of the Movement Disorders Clinic at the University of South Florida in Tampa. The standard treatment since the late 1960s has been levodopa, commonly marketed as Sinemet. At first, the brain easily converts the drug into dopamine, which allows brain cells to fire normally and reduces tremors. But as the disease progresses, the brain's ability to store and use the drug decreases. It's not clear why. Some patients, such as actor Michael J. Fox, develop a hypersensitivity to Sinemet as they increase the dose to compensate for its lost effectiveness. That can cause the body to twist and turn involuntarily, called diskynesia. Reno takes Sinemet and Mirapex, a similar pill that helps keep levodopa working better, longer. Potential side effects include involuntary movement, anxiety and hallucinations, although her doctors say Reno suffers from none of those. "A big issue on my mind is not only how she'll do during the campaign, but were she to win office, how would she do over the next four years," said USF's Hauser, who has no connection to Reno and has not examined her. He is co-author of Parkinson's Disease: Questions and Answers. Parkinson's does not usually attack its victims' intellect, but it can. An estimated 10 percent to 20 percent of patients suffer some cognitive decline, from mild forgetfulness to trouble making decisions. While Reno likely won't suffer from this, Hauser said there's simply no way to know. "I think she would have to say that she's going to have regular exams, and (identify) the doctor who would be in charge of evaluating any potential disability," Hauser said. Interviews suggest the potential effects of Parkinson's on her thinking and stamina were much on Reno's mind before she decided to consider a run for governor. Koller and Weiner said she talked to them extensively. Dr. Abraham Lieberman, medical director of the National Parkinson's Foundation, said Reno called him, too, after reading his book, Shaking Up Parkinson's Disease. In the book, Lieberman provides composite sketches of 10 patients, including a state senator who considers running for governor, then abandons the notion because his Parkinson's makes him too tired. Fatigue is a common symptom, but experts say some patients never complain of it. Stress also exacerbates symptoms, but the effect is temporary and it does not make the disease worse. Reno said she often trembled more at the start of a congressional hearing or other stressful event. "From my seeing her, the fact that she has the desire and the energy to run, and she's going statewide, is to me the best test of all," said Lieberman, who told Reno he had no qualms about her mental condition. Most patients discover little tricks to help control their tremors. Some sit on the offending hand, or hold it tight with the other, or grip something and then release it. On Wednesday, during her speech on domestic violence and elder abuse at the USF conference in Clearwater, Reno's tremors were noticeable but did not seem to affect her delivery. Sometimes she uses voluntary movements, like pointing or gesturing, to interrupt a tremor in her arm or hand. She has learned that if she's holding something with one hand, and that hand begins to shake, she can pass the object to the other hand and the shaking will stop. "If it's in this hand, I put it over here, and if it's in this one, I put it over there," she said, passing an engraved award she was given Wednesday from one hand to the other. Each time, her hand stopped shaking when she shifted it. "When I was diagnosed with this disease, I said I wouldn't let anything bother me, or stop me from doing the things I want to do. And it hasn't so far," she said after spending a half-hour signing autographs and posing for pictures with fans at the conference. * * * Running a statewide campaign in Florida is an exhausting ordeal for even the fittest candidate. It's 830 miles from Key West to Pensacola, and wooing voters in the sweltering expanse in between means 16-hour days, early morning plane trips and shaking hands at scores of barbecues, luncheons and county fairs. Serving as governor of Florida is demanding, too. Bush, 48, frequently starts his day at 6 a.m. and works late, often firing e-mails to staffers in the middle of the night. He travels frequently, and is often asked to stump for other Republican candidates. Reno dismisses questions about her stamina and says serving as the nation's chief law officer was grueling as well. Her term included Elian Gonzalez and Waco, Ruby Ridge and the Oklahoma City bombing, a hostile Congress, FBI bumbles and investigations of her own boss and members of his Cabinet. Former U.S. Deputy Attorney General Eric Holder, Reno's top assistant for the final 21/2 years of the administration, said her staff feared for Reno's health when she announced her Parkinson's. He said it quickly become apparent their fears were unfounded. "Her condition didn't affect her ability. . . . She constantly traveled, she constantly had people in her office visiting," Holder said Thursday. "It's tough (being governor), but I'm not sure it would be any tougher than what she's already done." Holder and Ann Harkins, Reno's chief of staff for the last two years of her tenure, said the boss frequently made one-day trips to California and would be back at her desk by 8 the next morning. "I can't tell you how many times 40-somethings would look at her schedule for the week and say, "How does she do it?' " Harkins said. "If anything, she's pretty hard to keep up with." Despite her tremors, friends say, there is nothing delicate about Janet Reno. People who meet her often remark first on her size. She stands 6 feet, 1 inch tall, and has maintained the same tough image she had as attorney general. She refuses security, books her own arrangements and often travels alone or with brother Mark. She lives alone in the Reno family homestead southwest of Miami and rambles about South Florida in a red pickup. Her passions include hiking and kayaking. She recently returned from a whitewater kayak trip on the Chatooga, Nantahala and Ocoee rivers in the mountains of South Carolina, North Carolina and Tennessee. She can roll her boat upright, without getting out, if she flips. "So I think I'm doing pretty well," she said. Reno cited a recent letter from a woman who cares for a Parkinson's patient. She had written "something to the effect of "please don't run, it's such a debilitating disease, you would do a disservice to the state of Florida,' " she said. "I haven't had a chance to respond to her. "I would not get into this if I didn't think I could run and serve and do so as actively as anybody else."
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From the Times state desk
From the state wire
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It has been six years since Reno was diagnosed with Parkinson's disease. She says she has learned to ignore its unpredictable tremors, and she wishes everyone else would, too.
