Caregiving Above and Beyond By Joel Havemann

     If I were a Parkinson’s caregiver instead of a patient, and the person I cared for was suddenly gone, I’d be sorely tempted to do one thing in a heartbeat:  run as fast as I could from Parkinson’s activism and try to think as little as possible about the disease that ripped my family apart.

Luckily for the Parkinson’s community, I’m not in that position, and not everyone who has been involuntarily placed in it is as short-sighted and selfish as I am.  All across the country, many are still fighting the good fight even though their spouses or other loved ones have died.  I’ll call them, with a certain irony, the detached activists—detached not from the fight against the disease, but from their loved ones who lost that fight.

For some detached activists, their social life has revolved around Parkinson’s for so long that, if they dropped out, they’d have to start over—usually at a relatively advanced age—to develop a circle of friends.  Others seek to honor the memory of their loved one.  Still others might have gotten hooked by the science of the battle against Parkinson’s and want to keep abreast of developments.

It’s usually a unique combination of these factors.  Just as the disease affects each of us differently, its burden on caregivers varies with each individual case.

But this much is true of all in this category: they are selflessly dedicated to making life a little more tolerable for those who are still battling the disease that stole their loved one.  I hope no one who belongs in this category feels slighted if I don’t mention you here.  You are legion, and I can’t know you all.

I met Gerry Haines when I happened to sit beside her four or five years ago at the Parkinson’s Action Network’s annual Udall Dinner, PAN’s chief fundraising event.  At age 65, she had been a Parkinson’s caregiver for about 20 years, but she was as full of pep as someone half her age.  At the time she was not yet a detached activist—her husband, Brignal, was there with her, having made the increasingly arduous trip to Washington from Bethlehem, Pa.

He was very familiar with the Bethlehem-to-Philadelphia leg of that trip, having been a regular in clinical trials run by Philadelphia’s research facilities.  (He even donated his brain to Parkinson’s research.)

Back in Bethlehem, Gerry was the leader of a support group sponsored by the National Parkinson Foundation.  Brignal died in 2008, but Gerry stuck with the support group.  “If I hadn’t, we would have lost the only support in the entire Lehigh Valley,” she says.
She admits that it isn’t easy to mix with Parkinson’s patients, “It reminds me of what has happened.”

At the same time, she feels at home with people with Parkinson’s.  “When I go out in another crowd, I feel uncomfortable,” she says.  “I never met a Parkinson’s person I didn’t like.  I just feel like I owe these people something….I hope I do some good for others, but that’s for others to judge.”

Over in the New York area, Fernando Fajardo remains one of the leading amateur students of the aging and damaged brain seven years after losing his wife.  “I keep at it out of love of my wife and intense curiosity about the brain.”

Fernando had a particularly trying time as a caregiver because his wife, Bennetta, survived for 13 years with multiple system atrophy, a condition that I think of as Parkinson’s times 10.  “Caregivers are on call 24 hours a day,” he found out, having become adept at managing bed sores, feeding tubes, and urine bags.

Four year’s after Bennetta’s death in 2003, Fernando, who is now 79 going on 50, contributed to a paper published in the Journal of Movement Disorders that explored the genetic component of unusually virulent forms of Parkinson’s.  A retired chemical sales engineer, Fernando contributed money, calculations, and even Bennetta’s brain to the research.

For the last five years he has also written a bimonthly newsletter for the Parkinson’s Support Group of Westchester County, N.Y., which has 85 members.

Maybe it’s just because I live here and know more people here, but there seems to be a particular concentration of detached activists in the Washington area.

One of the most endearing (and surely one of the most enduring) is Donna Dorros, who at age 82 is still running a weekly Parkinson’s support group in the Maryland suburbs 17 years after the death of her husband, Sidney, author of Parkinson’s: A Patient’s View.  They started the support group together in 1985, and she now offers 90 minutes a week, half exercise and half talk.

 “If they ask for advice, I give it, but carefully, not judgmentally,” she says.  “No two patients are alike….Some of them have become good friends.”

Why does she keep going:  For the benefit of the support group members.  “There’s nobody else to do it,” she says.

The most high-profile of the detached activists in Washington is Morton Kondracke, the newspaper editor and cable news commentator whose 2001 book, Saving Milly, recounts his effort to spare his wife from the ravages of Parkinson’s.

Six years after Milly’s death, Mort remains a moving force on the Parkinson’s Action Network’s Board of Directors and also serves on The Michael J. Fox Foundation for Parkinson’s Research Board.  He takes particular pride in helping to recruit radio talk show host Diane Rehm to PAN, Ronald H. Galowich to its Board—he’s now Chairman—and Jeff Martin, a former Chairman, who in turn recruited Amy Comstock Rick as its Chief Executive Officer.

 “Partly I’m staying to support Ron and Amy,” Mort says.  “It’s partly because I love all the people at PAN; I’ve been working for them so long that it’s just what I do.  And it’s partly out of Milly’s memory.”

Barbara and Robert Kupperman were married several years after his diagnosis in the early 1990s.  His symptoms weren’t disabling at the beginning, and, even as they grew worse, Barbara made a point of not letting Bob think of himself as disabled.  “I always thought we could beat it if we only tried hard enough,” she says.

They couldn’t.  A terrorism expert who moved between the government and the private sector, Bob died in 2006 at the age of 71.  But Barbara didn’t give up her campaign against Parkinson’s.  She still serves on PAN’s board, and she still helps individual Parkinson’s patients informally by driving them places and taking them out to meals.

A lot of people with Parkinson’s hesitate to go out, for fear of either injuring themselves or being stared at.  Barbara does her part to prevent that.  “Parkinson’s is part of me,” she says. “When Bob had Parkinson’s, it was like we both had Parkinson’s.  I feel like when I’m helping other people, I’m helping Bob.  I wish I still were.”

Susan Hamburger, whose husband, Stan, was diagnosed in 1980, has arguably spent as many hours of her life dealing with Parkinson’s as anyone in Washington.  Until Stan died in 2008, the pair was a common sight in their Washington neighborhood, with her pushing him in his wheelchair.  On top of her role as a caregiver, Sue was active in countless Parkinson’s organizations, particularly the Parkinson Foundation of the National Capital Area (PFNCA).

She scarcely let up after Stan died.  She is Board Chairman of the PFNCA.  She runs a large support group.  She recently published a book-length compilation of her articles in the foundation’s newsletter on the subject of caregiving.

And I can testify to her efforts to help Parkinson’s patients in need.  A few months ago, I was faced with an appointment about 25 miles away with the neurologist who adjusts the electricity delivered to my brain by my surgically implanted deep-brain stimulators.  But I had no way to get there; I don’t let myself drive that far, and my wife and kids were otherwise gainfully occupied.

Sue found out and insisted on driving me, waiting and shuttling me back home—just another three hours out of her life for the cause.