February 19, 1999 12:29 PM 

CRUEL AND UNUSUAL BY MORTON KONDRACKE

Having announced that she has it, Attorney General Janet Reno doesn't want to talk about Parkinson's disease.

Thats understandable, if unfortunate. Reno wants attention focused on her work at the Justice Department, not on a tremor in her left hand. Besides, as a newly diagnosed Parkinson's victim, she has five to ten years during which medication will all but eliminate her symptoms. Daring Christmas vacation, she was rollerblading merrily with leer sister in Florida. And Reno's neurologist. Jonathan Pincus at Georgetown University Hospital. has told her that cutting way down on dietary proteins and taking 1-dopa can keep her functioning nicely when her brain completely stops producing and storing dopamine. the chemical that gives the rest of us fluid motion.

Reno isn't the only famous person who'd just as soon not talk about Parkinson's. The Rev. Billy Graham doesnt1t want to talk about it even though he recently fell in a hotel bathroom and broke three ribs and even though many Parkinson's victims need his counsel on how to stop thinking that God has punished them and that they'd rather be dead. After Congressman Mo Udall finished running for president in 1976, he let people know that he had the disease but said he didn't want to be a "poster child" for Parkinson's. He talked about it when asked, but now he's unable to speak.

The one million Americans who suffer from Parkinson's disease need famous victims to talk about it because finding a cure depends upon getting the federal government, private donors, and drug companies to adequately fund research. Research money, sad to say, is not distributed according to how near breakthroughs might be- and in the case of Parkinson's, they are tantalizingly close-but according to how much political sex appeal the disease has. Hollywood and the gay community have pushed Congress to make HIV/AIDS the government's top research priority, with more than $1,000 spent each year per afflicted person, according to the National institutes of Health. NIH estimates that in fiscal 19%. cancer, with 10 million victims to AIDS's I million, will get $255 per victim. Heart disease. with 13.5 million victims, gets $61. Alzheimers disease, with 4 million victims, gets $78. Parkinson's gets $21 per victim.

I care about all this because my wife, Millicent, suffers from Parkinson's. Nine years ago. while we were helping one of our daughters with college applications. Milly noticed that her handwriting was getting wobbly. Soon, she developed a tremor in her right hand and had trouble washing her hair.

She went to the Neurology Center in Chevy Chase, where she'd once worked as a social worker, and was told she had Parkinson's. Having seen the devastation it wreaked on some victims and their families, she refused to accept the diagnosis. For a year we shopped for another explanation. going so far as to consider an operation when an orthopedic surgeon suggested the problem might be a pinched nerve in her shoulder.

Finally. there was no dodging the truth. And for six years. just as Dr. Pincus says, a drug called Sinemet controlled her symptoms. For the past three years, though, it hasn't. At unpredictable times - at a dinner party, for instance - the medicine would unaccountably go "off.'1 and she'd be frozen in her chair, unable to move.

She couldn't turn in bed at night without help. Her speech was becoming slurred. The medicine made her lips bunch up and made her feel miserable, though she has not suffered the wild dyskinesia-uncontrolled shaking - that the medicine produces in some victims. Her worst symptom is loss of balance. She wears a kayaking helmet around the house, but several falls have sent her to the hospital for stitches. last November, Milly underwent a pallidotomy, a brain operation featured recently on 60 Minutes and Prime Time Live. Her doctors, neurologist Mahlon DeLong and surgeon Roy Bakay at Emory University Hospital in Atlanta, are widely considered the best in the world at performing this operation and use the latest in high technology CAT scans, MRIs, and tiny radio probes-to map the brain and decide exactly where on a deep brain nucleus called the globus pallidus to cause lesions. The damage has a calming effect on nerve action, reducing Parkinson1s symptoms.

Four months after the operation, we judge it a partial success. Milly feels better, her lips don't purse, she doesn't freeze, she can get out of bed by herself. Yet, her balance hasn't improved. so we continue to pay visits to the Suburban Hospital emergency room, and twice this year she's had to have a plastic surgeon sew up her ear after a fall.

Millyts had to give up her psychotherapy practice. She can't drive. She's furious at the disease, which she says has robbed her of her independence and made her fear that she'll end u~-as she told Senator Bill Cohen's Aging Committee last year - 'unable to swallow, bed-ridden, dependent, a burden on others."

As it is, she said, "I feel diminished, embarrassed, and humiliated."

She's fighting, though. And Mo Udall is helping, even though he lies totally disabled in a Veterans Administration nursing home near the Washington Hospital Center complex off DC's North capital Street, Mo's kids Anne and Brad; a remarkable woman named loan Samuelson who was diagnosed with Parkinsons nine years ago at age 36; and Milly are key figures in the Parkinson's Action Network, which has emerged as the foremost group lobbying Congress for increased research. Another activist is Ma's wife, Norma, who works with the Miami-based National Parkinson's Foundation, which directly funds Parkinson's research. Each year, the Parkinson's Action Network holds a dinner honoring Mo UdalI and people who bring class and humor to politics as he did. Past honorees have included that mordant wit Senator Alan Simpson. whose father suffered from Parkinson's, and Senator Mark Hatfield, chief sponsor of a bill named after Mo Udall that calls for NIH to establish a separate Parkinson's research program and to eventually fund it with $100 million a year, or $100 per victim,

This year's dinner is April 17, with comedian Mark Russell and retiring senators Bill Bradley and Bill Cohen as honorees.

Honor him though we do, Milly's and my greatest fear is that she'll follow Mo Udall's horrific Parkinson's trajectory.

Once, Mo was the funniest man in American politics, an inspiring liberal and environmentalist. One of his best lines was delivered in 1970, after he thought he had enough commitments to be elected House majority leader only to turn up 58 short in secret balloting. He said, "Now I know the difference between a cactus and the [House Democratic] caucus. On a cactus, the pricks are on the outside.

Under the care of NIH's Dr. Tom Chase, who takes pride in helping famous people conceal their Parkinson's - one current example is a television correspondent who's afraid he'll get fired if his bosses find out - Udall was able to appear symptom free from 1976 until the early 1980s, when his six-foot-five frame began to stoop, his head began to shake, and his facial muscles began the process of freezing into "the mask," a common Parkinson's symptom. His speech became progressively slurred, and he seemed to become forgetful, re-telling jokes everyone had heard before.

By the late 1980s, he was experiencing mild hallucinations. as some Parkinson's sufferers do as a reaction to levadopa, the active agent in Sinemet. Neurologists say that some people see little green men. Mo, according to Norma, thought he saw a little white dog ducking around their house. "We'd joke about it," she says. "He'd say, there it goes again,' and I'd go from closet to closet, checking and saying, 'Nope, not here.'"

As time went on, Mo could barely get into and out of a car. He had difficulty getting words out. Either the medicine or the disease turned his internal clock around, so that he'd stay up all night pacing the house and be dead tired during the day. when he was supposed to be alert in chairing the House Interior Committee. He couldn't cut his food and eventually had to be fed. "He never once said, 'Poor me,' Norma says. "He never acted embarrassed or depressed. He'd kid, when he couldn't get in the car, took at me, Morris K. Udall, star athlete.' It was black humor."

Udall announced after his reelection in 1990 that he wouldn't run again, but he did not make it to the end of the term. In January 1991, tired of watching an NFL play off game, he decided to go up stairs to bed. "Seeya later," he told Norma. The Udalls' Arlington townhouse has an elevator, but he hated to use it because if he leaned against the door, it would stop between floors, and he couldn't make it start. Be sides, of all the afflictions of Parkinson's, the one he didn't seem to have was trouble climbing stairs.

Norma says she heard him mount four or five steps. Then she heard him yell---and crash. She ran to find his head covered with blood. He suffered a concussion, four broken ribs and a broken collarbone and shoulder blade. He spent weeks in intensive care at NIH, then went to the National Rehabilitation Hospital. then to the VA. He resigned from Congress in May 1991, two days after the 30th anniversary of his winning a special election for the seat his brother, Stewart, vacated to become John F. Kennedy's secretary of the Interior.

"See ya later" were the last clear words anyone has heard Mo utter.

Visiting Mo is both reassuring and disconcerting. Sleeping, he looks surprisingly like the Mo of memory and younger than his 73 years. He's obviously being well cared for. He has a private room, the walls plastered with photos from his pro basketball days. presidential campaign posters. and other political mementos. A guest book indicates that he's been visited by First Ladies Barbara Bush and Hillary Rodham Clinton, many House and Senate colleagues. led by Arizona senator John McCain and former senator Dennis DeConcini, and by actor Cliff Robertson, who traipsed the campaign trail with him in 1976. One visitor had told me that seeing Mo was heartbreaking because he seemed to be so uncomprehending.

My experience was different When Norma woke him up, telling him he had a visitor, Mo looked at me with some recognition and a partial smile, the way an experienced pol does with a constituent whose face he thinks he's seen before. I started regaling him with the then-latest political news: Clinton's State of the Union, Dole's bomb of a response. Newt's diving poll ratings. For five minutes or so, he seemed to brighten and his eyes suggested comprehension. Then he fell back to sleep.

Did he understand anything? Norma says that she operates on the assumption that he understands what's said and read to him. But that's also a frightening thought: It means that he's trapped with his thoughts. unable to connect with other people. You can understand why I'm determined to work for a cure.

Finding a cure in my Milly's lifetime, and in Janet Reno's, seems entirely doable -if enough money gets devoted to the effort. According to Mo's doctor, Tom Chase, director of experimental therapeutics at NIH's National Institute of Neurological Disorders, basic neuroscience has produced substantial new knowledge of brain functioning over the past decade, but it hasn't been followed up with enough applied research to develop potentially promising treatments. Part of the problem is a limited federal budget. which can fund about one-tenth of peer-approved research projects. Another, says ~ Chase, is a provision that used to be in the contract between NIH and drug companies that gave the government the right to restrict the profits companies could make from products developed in cooperation with the government. Though that right was never enforced and no longer exists, a climate of suspicion remains, Chase says.

Parkinson's is caused by the gradual death of a cluster of dark cells near the base of the brain called the substantia nigra, which produce dopamine. Why they die is unknown, but several research tracks are being followed to slow or reverse the process or control the symptoms. One of the most promising is neural growth factors, chemicals or gene therapies that may rejuvenate brain cells. Another is neuroprotective agents such as "free radical scavengers." which prevent metabolic toxins from destroying brain cells.

Gene research also offers promise for Parkinson's. There's evidence that Parkinsonts runs in families---it does in Udalls---so there may be a gene conferring susceptibility. Researchers are trying to figure out how to reprogram the genetic code of cells and then inject them into the brain, where they can produce dopamine.

Surgery is a hot area in Parkinson's research and treatment right now, with pallidotomies being performed with increasing frequency. A new operation involves the implantation of tiny electrodes in the brain to stimulate cells deactivated by Parkinson's - a kind of pacemaker for the brain. Other researchers are working to even out the effect of traditional medicines like L-dopa. And still others are trying to discover whether environmental factors contribute to Parkinson's.

As in many medical fields, there's rivalry and backbiting among experts. Some advocates of yet another research track, transplants of dopamine-producing cells from aborted fetuses, claim that pallidotomies are ineffective for many Parkinson's symptoms. There's a danger that the federal government will declare pallidotomies, along with fetal transplants, "experimental" and not eligible for Medicare reimbursement. If that happens. insurance companies will follow suit, and people who want the operation-which works for some patients will have to pay tens of thousands of dollars for it out of their own pockets.

Meantime, Pincus, regarded by some of his colleagues as an "extremist." insists that 1-dopa and a low-protein diet will keep most "classic" Parkinson1s victims active for life, though he admits that for others, who have neurological complications that experts label "Parkinson's plus," it may not. Milly, for one, eats little protein, with not much effect. Pincus hotly disputes the assertion of rival researchers that 1-dopa itself destroys brain circuitry.

He says that fellow neurologists under rate the low-protein track "because it's cheap as dirt" and doesn't attract big research funding. "All of the other major treatments share one of three characteristics - they're expensive, they're dangerous, and they're ineffective," he says. He's especially down on surgical techniques, which he denounces as "using human beings as experimental models," And yet, for some people, pallidotomies and fetal transplants produce significant improvements. Moreover. even Pincus thinks there is merit in neural regeneration research.

The fight over lifting a ban on federal funding of fetal-transplant research is what got Joan Samuelson into Parkinson's activism. In 1986, then a corporate lawyer in Los Angeles, an active athlete. and married just a month, she began noticing stiffness and swelling in her left knee after exercise. In a short time, her knee began collapsing under her weight.

An orthopedist prescribed and per formed arthroscopic surgery. When Joan awoke, he told her there had been nothing wrong with her knee. She burst into tears.

She went to see a neurologist who diagnosed multiple sclerosis, a disabling disease usually found in young adults. Six months later, another neurologist said she had Parkinson's, a disease that used to be found mostly in people in their Ws and 70s. No one knows why people are coming down with Parkinson's at younger ages, though environmental factors are one possible explanation. Today, the average age of onset is 57, and 30 percent of the victims are underage 50.

For four years. while she still hoped to have children, she declined to take Sinemet, and her condition deteriorated. She had to drag her left leg to move around, went beyond her house and office as little as possible, and used wheelchairs at airports. She finally decided that she had to take the medicine, and it's improved her condition considerably. She agrees with Pincus that cutting down on proteins has a positive effect, though everyday stress and fatigue cause her to limp and experience tremor and stiffness.

In 1990, then practicing law in Northern California, she read in the newspaper that Congressman Henry Waxen was sponsoring a bill to lift the ban on federal funding of fetal cell transplants that had been imposed in executive orders by Presidents Reagan and Bush at the behest of the anti-abortion movement. "I called all the national Parkinson's foundations," says Samuelson, "and they all said, 'We don't do politics.' " She called Waxman's office to offer her help, and the next thing she knew she was testifying before Congress.

At the hearing, Joan met Anne Udall, Mo's daughter, who's been her ally ever since. They and other witnesses, including Guy Walden, a born-again Baptist minister and abortion opponent, testified that animal experiments, foreign operations on humans, and a few privately funded US tests indicated that transplants of various cells from aborted fetuses could "take" in a recipients body and help not only Parkinson's victims but victims of other diseases, including juvenile diabetes, Alzheimer's, and Hurler's syndrome. an enzyme deficiency that had caused three of Walden's children to be born disfigured and retarded. They also testified that' with safeguards written into Waxmans bill, there was no danger that abortions would be performed in order to secure transplant materials or that lifting the ban would cause more abortions to be performed.

The three lobbied to help Waxman, and their testimony was cited again and again on the floor of the House, where his bill passed 27 to 144 along with a safeguards amendment sponsored by Republican Congressman Fred Upton.

Seven months later, in March 1992, the bill passed the Senate amid speeches of endorsement from then-Senator Brock Adams, who since has been diagnosed with Parkinson's; Senator Paul Wellstone, both of whose parents had it; Mark Hatfield and then-Senator John Danfoith, both foes of abortion; Senator Strom Thurmond. whose daughter suffers from diabetes; and Senator Bob Dole, who declared that "given the great promise of fetal-tissue transplants and the protection against abuse, I believe that to support this research is the true pro-Iife position.t

The Senate passed the measure 87-10. It was vetoed by President Bush. The House then failed by 12 votes to override the veto. Bill Clinton lifted the ban as one of his first acts as president. As he signed his executive order, Clinton held up his pen and said, "This is for you. Mo."

Amid the fetal-tissue fight, Joan Samuelson organized the Parkinson's Action Network to give the Parkinson's community an assertive voice. Other Parkinson's groups are now allied with PAN in the effort to secure higher funding for NIH research and to get the Udall bill passed.

This year, thanks to Congressman John Porter, chairman of the House appropriations sub-committee that oversees NIH, and also thanks to Congress's budget tangles with President Clinton, NIH funding is getting a 5.7 percent increase even as other federal programs are being cut. However, with the Udall bin locked in committee - in the Senate because of reluctance to micro-manage NIH and in the House be cause of threats to revive the fetal-transplant ban -Congress has not directed NIH to increase Parkinson's funding.

Joan Samuelson, who now commutes between Santa Rosa, California, and Washington. says ifs no accident that Janet Reno, Billy Graham, the TV correspondent, and others don't want to take part in Parkinson's activism. Muhammad Ali, bless him, is an exception to the rule.

"People in our community desperately want to be appear normal," she says. "Sinemet helps them for awhile, and neurologists keep them quiet by telling them, 'Parkinson's is not a fatal disease,' and 'You're lucky you don't have Alzheimer's or Lou Gehrigs disease.'

"It's only later, when they get frozen or start throwing food around from dyskinesia, that they discover that Sinemet isn't a solution and that they're not lucky at all. But by that time, they're used to being silent. They are so embarrassed by the symptoms that they want to stay invisible, And ifs so hard to just cope with life and get around that they don't have the energy to do much else."

The motto that Samuelson wrote for the Parkinson's Action Network is "Invisible no more. Her idea is to have Parkinson's victims be like MDS or breast cancer victims and "march right out of the doctor's office and start demanding a cure."

Janet Reno, Billy Graham, and others ought to help. In the end, besides helping Milly, Joan, and a million other people, they'd be helping themselves. For me, there's no time to waste in finding a cure: Milly has had Parkinson's for 9 years. When Mo Udall fell, he'd had it for 15.

Morton Kondracke is executive editor and columnist for Roll Call, a regular on The McLaughlin Group. and a board member of the Parkinson's Action Network.

"Cruel and Unusual" appeared in April, 1996 issue of The Washingtonian. It has been reprinted with the author's permission.

For more information about the Morris K.Udall bill contact the Parkinsons Action Network at:

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Last modified: February 19, 1999