Parkinson's and Politics
By: Source: AARP Bulletin Today Date Posted: 2003-06-27 13:24:37
Veteran journalist Morton Kondracke sits in his Washington office, talking about his new book. He is a consummate Washingtonian—engaging, direct, immersed in many things at once.
Surrounded by headlines from Roll Call, the Capitol Hill newspaper he oversees, he compresses into less than an hour everything he wants to say. Then he's up and ready to go: back to the computer that nearly lost today's editorial; back to the myriad things that clamor for attention from a man who edits a newspaper, co-hosts a TV show and contributes regularly to a major news channel.
The only thing that derails Kondracke from his juggling is a question from a colleague: "How's Milly?"
Kondracke stops in his tracks.
| Photograph © Robert Trippett |
"She's having a feeding tube installed. It's less of a big deal than I thought," he says, almost apologetically.
If there's a center to Kondracke's whirlwind, it's not his career. It is his wife of nearly 34 years, Milly, a former psychotherapist and mother of their two children.
In 1988, when Milly was diagnosed with Parkinson's disease, a progressive neurological disorder, Kondracke says he was "pretty naive" about the disease, the devastation it could cause and the barriers to a cure.
He chronicles the effects of Parkinson's on his wife, himself and their family in his new book, "Saving Milly: Love, Politics, and Parkinson's Disease" (PublicAffairs, 2001). He also explains why advocating for more federal spending on disease research has become "his" cause.
"In the first five years that Milly had Parkinson's, I naively thought disease funding was an objective, scientific process, sort of apart from politics," Kondracke recalls. But when he saw that the budgetary process pitted one disease group against another, and that precious few dollars went to Parkinson's research, he decided to become active in pushing for more money.
In the early 1990s, he met super-lobbyist Terry Lierman. "The upshot of his tutorial was that research itself produces miracles for mankind, but getting the money for it is as dog eat dog as any other kind of politics.
"Terry told Milly and me," Kondracke says, "that diseases were allocated research money based on the clout of their advocates" in the White House, Congress, the media, public opinion and the National Institutes of Health (NIH), which supports most U.S. health research.
Kondracke threw himself into fundraising and lobbying, alongside others who sought more money for Parkinson's and other diseases. Their efforts may have been why Congress increased NIH spending; the agency is on track to double its 1998 budget by 2003.
Though gratifying, that's not enough for Kondracke. He wants to see the budget double again within the next five years.
"We're in sight of so many breakthroughs—disease breakthroughs, genetic breakthroughs … it would be a tragedy not to continue this progress."
Initially, Kondracke pushed solely for an increase in Parkinson's funding. But, he says, he came to believe that supporting an overall increase in NIH spending was the better way to go. It's bad strategy, he says, to fight with AIDS activists or breast cancer survivors or Alzheimer's victims over whose disease is "more deserving."
Kondracke still bristles, though, at what he sees as an underfunding of Parkinson's; he hopes continued pressure on Congress—and attention brought by actor Michael J. Fox and former Attorney General Janet Reno—will translate, ultimately, into a cure.
"Practically every American has a stake in this," he says. He hopes others will pitch in by urging members of Congress and the president to fund more health research.
It is likely that any advance will come too late for Milly. "She's struggling," he says candidly.
When Milly got sick, "my first job was convincing her … that I would stick by her," Kondracke explains. "There was never a question that I was not going to. But I had to convince her."
Theirs has not been a placid marriage, says Kondracke. He paints a portrait of the former Millicent Martinez as a vivacious, generous woman whose difficult childhood makes abandonment an ongoing worry. He describes himself as curmudgeonly, self-absorbed and, at one time, alcoholic. But he also describes himself as a man transformed by the need to step up to the plate. After Milly's diagnosis, he says, "I became a dedicated partner." Not a saint, he stresses—just a loving husband.
In fact, getting him to stop drinking was one of the last exercises of Milly's old power, says Kondracke. Ironically, it was his new sobriety and commitment to Milly that enabled him to rise to the challenge of losing, slowly, the woman he calls his "best friend."
preview