Sat, Jul 04, 2009
 Bob's latest project is this invention to keep him upright in the shower. Falls are common for Parkinson's patients, and Bob fears spending his final years in bed as his idol, Congressman Mo Udall, did for seven years before his death in December 1998. More Photos (8):
       
RANCHO RESORT MAINTANANCE POSITION Health Care Sierra Tucson Eating Disorders Program Coordinator General A1 Communications Cable Techs Accentcover story
Fighting Parkinson's'This is a helluva way to die.' — Bob Dolezal
ARIZONA DAILY STAR
Tucson, Arizona | Published: 04.06.2008
Bob Dolezal knows that the quality of his life will continue to erode, that he will be sicker tomorrow than he is today.
So far, Bob has met the many insults of Parkinson's disease with dignity, humor and a fierce determination to do all he could to find a cure.
His touchstone has been the champ — Muhammad Ali — who continued to appear in public to raise money and awareness even after the disease had sapped his ability to speak.
In a poem he wrote and recited to Ali, Bob exhorted Parkinsonians to continue the fight "even from our knees."
As he readies himself for the final rounds, Bob wonders if he'll live up to his own brave words.
– Tom Beal
The guy on the next bar stool seems friendly enough. He strikes up a conversation, but he's having some trouble remembering words. His elbow keeps slipping off the bar.
I blame it on the glass of whiskey in front of him and keep some rhetorical distance.
It's an October weeknight at Bob Dobbs, the Sam Hughes neighborhood bar and grill at East Sixth Street and North Tucson Boulevard. The baseball playoffs are on multiple screens.
A young woman comes over and the two of them talk about retinal pigment epithelial cells and their promise for treatment of Parkinson's Disease, and I realize that his symptoms aren't a sign of drunkenness.
I also recognize that this guy is smart and funny, and I was ready to turn away to the baseball game and try to ignore him.
The woman leaves and we chat about baseball. He's a Detroit Tigers fan and I'm for the Phils. Neither is still in contention and we both care little about the games on the tube. We talk about his Parkinson's, about other stuff and nonsense.
He asks the nationality of the beer I'm drinking, a Belgian Stella Artois, and he puzzles out its translation "Stella, stellar, star — God don't you love it when you can remember stuff?"
I do — at age 57, I do — but for him it's an even bigger kick. Parkinson's, and/or the drugs that keep it at bay, have magnified his word-finding difficulty.
Before I leave, I introduce myself and he tells me his name. We smile.
We've never met in person, but we've talked on the phone. He's written lucid, persuasive columns for the Star's Editorial section where I used to work.
He'd lobby us to take up the battle for Parkinson's funding or fetal tissue research, or to at least print his letters and his op-ed pieces. He was persistent.
In 1998 we published his essay about appearing onstage with Muhammad Ali and reciting a poem that lauded the champ's many victories in life, including his support of Parkinson's research.
Those who share Ali's fate, in particular, admire his courage for being public with the disease. Showing his deterioration encourages others to follow a popular Parkinson's rallying cry: "Invisible no more!" Yet it is clearly more difficult for a "regular" Parkinsonian to be visible in public without embarrassment than it is for Ali, whose friends are there to help. Ali never has to reach into his pants pocket for change or a billfold, two simple actions for the unafflicted that can create embarrassing moments when a Parkinsonian's fingers are stiff or his or her arm is unable to move, and five people wait impatiently in line behind him or her.
. . . I wonder how I will face up to the "visibility" test when my time comes. It is easy to pontificate about how others should remain in the public eye, yet I already sense that it will be more difficult in practice.
That time has come for Bob Dolezal. He has to endure jerks.
At our second meeting, again at Bob Dobbs, I learn he has given up most of his crusading. He is former Arizona chapter president and regional representative to the board of the American Parkinson Disease Association and is credited with successful lobbying for a bigger share of federal research money.
He's still on the board, still hopes his efforts will find a cure, but he has always suspected that it will come too late for him.
When his spirits are up and his symptoms under control, he takes his meals at a bar or restaurant where people are mostly friendly.
He's comfortable here at Bob Dobbs, which has been a regular stop for years.
His friends here know of his affliction, though strangers have my problem of not getting past the little dance Bob's body is always doing, unbidden.
"This is a helluva way to die," he says.
Parkinson's Disease is indeed a helluva way to die.
Bob's fear is that he will end his life as longtime Arizona Congressman Mo Udall did after taking a fall on the stairs of his Virginia home in January 1991.
He never spoke or fed himself again. He simply lay in a hospital bed until his death in December 1998.
"Can you imagine?" asks Bob. "Mo Udall, that magnificent voice, unable to speak?"
Parkinson's is a degenerative neurological disease that hastens the loss of brain cells that produce dopamine, a chemical needed to send the "go" and "no-go" signals that control movement.
The classic symptoms are tremors in hands and feet, an expressionless face, low voice, shuffling gait, freezing up, loss of balance.
Symptoms can be controlled with varying success and for varying lengths of time with drugs and more recently with implantation of electrodes into the signal-sending areas of the brain.
The drugs produce their own symptoms, like Bob's dyskinesia — involuntary movements that keep him perpetually in motion when the drugs are producing too much dopamine.
Doctors know how the symptoms of Parkinson's Disease occur. They haven't figured out why they occur but believe that a mix of genetic predisposition and environmental factors causes the loss of brain cells.
At present, Parkinson's can be treated, but it can't be stopped, reversed or prevented.
Bob was diagnosed in 1992 when he was 56 years old. He's had a pretty long "honeymoon period," the stage at which the drugs do their job and drug-induced symptoms are minimal. In the past year, however, Bob's begun a slide.
He's often tired and has trouble with simple motions, like buttoning shirts or putting on shoes and socks. His medications work erratically and produce more dyskinesia.
He has trouble finding words. He switches subjects and often can't finish a thought. At a recent checkup with neurologist Scott Sherman, he began telling his doctor the two things that bother him most.
"Number one, I can't remember, and number two, I can't remember, either."
He was joking to make a point. He does that a lot, laughing in the face of his certain deterioration.
Bob finds little solace in the medical truth that Parkinson's doesn't appreciably shorten your life span.
"It does kill you," says Bob, "if not immediately and directly, it kills you gradually and just as completely."
"You can't swallow, you quit eating, that's gonna be fun. Man, I'm looking forward to that just for the knowledge I'll gain."
Bob and I get together regularly after our first meeting, but the interviewing is problematic.
Bob spent a portion of his life as a journalist. He's a little too savvy about the process and tends to direct it.
Then there's the wandering. Keeping Bob on topic is difficult, always was, according to friends, but the Parkinson's exaggerates his tendency to jump from subject to subject in a stream whose currents are recognized only by him.
New tactics are called for.
Thursday, Nov. 8, 2007
I vow to keep my notebook in my pocket on a visit to Bob's apartment at Broadway Proper Retirement Community.
Then Bob starts talking about a recent trip to his hometown of Wahoo, Neb., where he visited an old friend dying of a neurological disease, not Parkinson's, but the effects were similar to the end game he knows he faces.
"I kissed her through the drool. She recognized me."
This is his worldview. It's divided into shakers and droolers, the upright and the prone.
While in Wahoo, he visited the graves of his mom and dad. It was gorgeous fall weather, the grass still green. He lay down on the ground reserved for him.
"I thought, 'This'll do,'" he says. "I just thought of it as a big relief."
He doesn't fear death, though he's not at all certain what comes next. Born into a Czech Catholic family in a town half-full of Czechs, he left the church when he was in the Army, in uniform, and they tried to charge him admission to St. Patrick's Cathedral in Manhattan.
"I'm not a fallen-away Catholic. I'm a walked-away-with-eyes-open Catholic."
A couple years back, when he nearly died during treatment for stenosis of the cervical spine, he didn't think of summoning a priest. He simply had a little chat with God.
"I said, 'I don't know who you are, what you look like or if you're even interested, but if you're there, I want you to know a few things. I've tried to do some good in this world, and I still have a few things I'd like to do. I want to see a cure for Parkinson's even though I'm not going to get anything out of it.'"
We're meeting in the afternoon for an interview before dinner, and Bob has not only checked out the menu at Broadway Proper's restaurant, he has sampled the three entrees so he can give me a report: The tilapia is tasty, the veal parmigiana is passable, but the best is the vegetable quiche.
First, though, a cocktail. Bob is always stocked with Early Times bourbon. I'm an occasional bourbon drinker but opt for a light beer, being on the job and driving a car and all that.
Off to dinner with a bottle of merlot. They've reserved us a table by the window, but Bob wants one in the center of the room. He stops to visit a few tables, turns his involuntary movements into a graceful dance, at times breaking into song. He has a fine voice and a head full of remembered lyrics.
There is a grand piano in the dining room. He stands and plays for a few minutes, stringing together chords rhythmically, though there is no recognizable melody in the music.
His mother made him take piano lessons. He never mastered the instrument, though he fakes it quite well.
His buddy Lou Axelrod joins us after dinner for a glass of wine. Like most of Broadway Proper's residents, Lou is older than Bob. Unlike most, he is male. Lou is 95, fit, sharp, goes to the gym, plays tennis three times a week and would play more if his group had a bit more stamina.
Tennis was Bob's game, but he stopped playing shortly after his diagnosis. He lost the ability to connect on an overhand serve, and he doesn't like playing beneath the level he had established for himself.
Lou has outlived two wives: a 34-year marriage to his childhood sweetheart in Philadelphia and another 31-year match with a woman he met when he moved to Florida — "Jeanne with the light brown hair." Bob sings a few bars.
Lou says his late wife was six years older than he but more outgoing. She sang and danced and made friends. Her son, who lives in Tucson, persuaded the couple to move here, to this place where they could live independently but have someone to cook meals and manicure the yard — "Let Lou relax a little."
Jeanne died seven months after the move, just like that, heart gave out. Lou's eyes tear up when he talks about her.
Bob is prodding him into another match. There is a 90-year-old woman two tables away whom both agree is the sexiest woman in the room. Not for him, says Lou. He doesn't have another 30 years in him.
Bob worries that he might. His big concern is the usable part of his life.
Thursday, Nov. 31, 2007
We go out for sushi on a rare damp night in Tucson.
Bob is in shorts and a long-sleeve shirt that was pre-buttoned when he pulled it on over his head. The cuffs, however, are unbuttoned and he struggles with them for several minutes.
He's had two bad days in a row where just getting out of bed was difficult.
He's lost his wallet. I find it on the nightstand.
I also locate his pillbox, labeled with the days of the week, on the counter in the bathroom.
He could do these things himself, eventually, but like most non-Parkys I find myself getting a little impatient with Bob's pace. In addition to finding his things, I've been helping him find his words and finishing his sentences.
He gobbles down a couple pills that should keep him up and feeling well through dinner.
I've been reading up on Parkinson's, and Bob is not a poster boy for living with it. An orderly, uncluttered environment is recommended.
Bob's apartment floor is stacked with important stuff — his reading, his research, his writing, several generations of communications paraphernalia each with its own non-functioning remote control, his mail, his bills, his newspapers.
His kitchen counter, including the stove, is covered with art projects and materials. The electric stovetop has been disconnected to prevent a fire.
A couple of painful admissions over dinner.
His recent trip to Wahoo was less than successful. In his meeting with the library board — which at first wanted a $50,000 contribution to permanently house his mother's artwork — he had a Parkinson's meltdown, rambling on about topics related only in his mind for how long he doesn't know.
He has just now admitted this to himself. He has also come to the conclusion that it's time to give up driving and sell his car.
At the sushi counter, one of his regular restaurant stops, the chef greets him as "Bob-san." He handles his chopsticks deftly — a surprise after the struggle with the buttons.
A similar thing happens in our pool games back at Broadway Proper. He has a good stroke, banks in balls, shoots behind his back when he's in a tight spot on the rail, circles the table like a young man.
Some things are easy, some not.
Tonight, he will try to pay for dinner only to have his credit card declined. He canceled it when he thought it was lost or stolen, then found it, then forgot he had canceled it.
It's getting tough to live a normal life, but Bob mostly pulls it off. "I think I've been able to preserve my dignity," he says.
His face puffs up. He dams a tear with his napkin.
As we leave, the sushi chef says he'll see him soon.
"I'll try to drop by again before I go," Bob says.
"Oh, you going somewhere, Bob-san?"
Bob points to the heavens.
Bob doesn't want to live out the final chapters of his disease.
Maybe he'll keep that Hyundai Santa Fe and drive it somewhere, direct the exhaust into the interior.
It's not an immediate option. Parkinson's has just begun to test his will to live.
Up to now, he has met the challenge — turned it into his life's greatest accomplishment.
● Contact reporter Tom Beal at 573-4158 or tbeal@azstarnet.com.
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