CHAPTER 1
Lori's Life
Lori Patin says, "I am a very lucky person—within a veryunlucky situation. You might find it strange that I say thisconsidering that I have had Parkinson's disease for more thanfifteen years. Perhaps you will come to agree when you getto know me better. While I would surely love to be free of thisdisease, there have been blessings along the way. And hope ahead.if you or someone you love faces something awful, something thattries to tear your world apart, I offer my story in the hope that youwill find encouragement here."
She was born Lori Cedik in 1942 outside Cleveland, Ohio.All four of her grandparents emigrated from Czechoslovakia. Herhusband, Bob, likes to say she is a pure-blooded Bohemian—uniqueand exotic in his imagination. Not surprisingly, herfamily was very "old school," in the European sense. Her parentswere strict, and as part of their family culture, they spent a lot oftime together with grandparents. Both her mother's and father'sparents lived on farms. Her younger brother, Don, and she, alongwith their parents, spent almost every weekend visiting one setof grandparents or the other. Sometimes they would just go for ameal, but often they would stay over Saturday night.
While Lori's mother's parents did not earn their living byfarming, her father's parents had a very successful farm, with largeorchards, where they grew apples, peaches, plums, and cherries.Their family often helped Grandfather with harvests because heneeded extra hands.
He also had a vineyard and even made his own wine. Forspecial occasions, he went down to the dirt-floor cellar and tooka dusty bottle from under the stairs. When he took the top off thebottle, smoke drifted up. Then everyone had to drink a little glass,even four-and-eight-year-old Don and Lori. It was horrible.
Her grandfather prided himself on using the most up-to-dateagricultural methods, including spraying his apple trees to protectagainst disease and blight.
Unfortunately, those "happy days" have come back to hauntLori. Parkinson's disease occurs more frequently in farm families.Experts find an increased incidence among people with exposureto agricultural chemicals.
Lori Cedik was a good student and the kind of child wholiked to please her parents and teachers. She was diligent anddetermined early on that she wanted to go to college. Today, afamily would be proud of a daughter with ambitions like that, butLori's parents, especially her father, were shocked. No one in herfamily had a higher education except the father, who had gone toa kind of engineering trade school. When she told him she wantedto become a lawyer, he said, "No. Girls are not lawyers. Girls aremothers."
So, painfully and reluctantly, Lori put that dream aside butwould not give up on going to college.
She told him, "I am going to college."
"Well, how are you going to pay for it?" he asked.
"I will find a way."
When Lori earned a scholarship to Muskingum University,he said she would have to pay for the rest of her tuition andliving expenses herself. Yet when the time came, he paid for themanyway. He was "old school" and stubborn, but in the end, hislove for Lori trumped a long-held bias toward women. Father anddaughter both ended up growing through the experience. Lori wasproud of him for changing his chauvinist ways, and in turn, hetaught her a lesson about the importance of changing long-heldbeliefs when it matters for someone you love.
When Lori graduated from Muskingum University, he wasalso one proud parent. "He didn't put it to me in so many words,but I knew. I often overheard him talking to his friends abouthis daughter who graduated from college, the first person in ourfamily to do so," she said.
At Muskingum, Lori met Bob Patin, her "current and onlyhusband." She says, "I have to admit that at first I did not care forhim at all."
Freshman year they went with a group to ski in Pennsylvania.Even though everyone was all jammed into one small car, Lorididn't speak to him. "I made up my mind he was full of himself—withouteven saying a word to him." She kept running into himat different things over the course of the next two years, but shealways thought, Oh my gosh, somebody ought to tell him that he isn'tas great as he thinks he is.
To be completely candid, however, Bob thought Lori was "agorgeous but snotty broad who dated all the wrong guys in thewrong [i.e., rival] fraternity." As it turned out, they both were infor a surprise.
Senior year, needing a date for a concert, Bob asked one of hisbest friends, Terry, for ideas because Bob's then-girlfriend had justgiven him back his fraternity pin. Terry suggested Lori because heknew she had also just been through a breakup so she would beavailable. When he called, Lori didn't want to seem overanxious.In fact, she probably wouldn't have gone at all if she hadn't justbroken up with her boyfriend. Also, Bob invited her to a FourFreshmen—her favorite group—concert.
Lori says, "Then I did a terrible thing. I debated whether Ishould accept him or not with my sorority sisters. While he wasstill on the phone! Holding the receiver out so he could hear!"
"Pretty demeaning," Bob says. The consensus among thesisters—which Bob heard—was, "What do you have to lose?"
Bob had to get back at her somehow. So when he showed upat the Delta Gamma Theta house, he brought dead flowers. Itlooked like a bush.
She thought this was hilarious. "It was the best date of myentire life."
What a shame. It was April, almost the end of their senioryear, and they had wasted all that time disliking each other.From then on, they spent every possible minute together. It wasfrenetic, attending fraternity parties, going to movies, even doingsilly things like cow tipping (big in Ohio!). In fact, they enjoyedthemselves so much that Bob almost flunked trigonometry.
Lori says, "Good thing he managed to pass, because withoutit, he wouldn't have graduated. We even broke the Delta GammaTheta rules big time by meeting on the sorority house fire escapeafter hours. He didn't have a lot of sense: he wore a bright whiteshirt and white shorts on a night with a full moon. It was as if hewanted to attract the campus police's attention."
"Courage trumps intelligence," Bob says. "And hormones dotoo. We had a lot of chemistry going for us."
They even went "turfing," where you sneak out to thefifty-yard line on the football field and get personal. "My fatherhad been so strict with me that I was grounded if I was as much asfive minutes late coming home from a date. I thought, Dad, youought to look at me now."
Lori says, "I guess I tripped over the line into respect for Bobwhen, at an off-campus party, he poured his drink out into a bush,saying he'd had enough. I said to myself, 'Wow. That is reallyresponsible. Maybe I've got a keeper.'"
Luckily, Bob's first job with Connecticut General Insurance(now known as CIGNA) was in Cleveland. Since Lori was homefor that summer of 1964 after graduation, they got to see eachother all the time for several months. He shared a one-bedroomapartment with nine other guys. They cleaned it twice a year,whether it needed it or not. You couldn't even see the floor ofthe kitchen. One time she said she would make dinner for him.It took her about two hours to get the kitchen clean before shecould cook because it was stacked with pots and pans—"dirty, allof them dirty."
Time was fleeting and precious, but come August, they bothknew she was going to leave home and drive out to Californiaon Route 66 with her sorority sister and roommate-to-be. She'dsigned a contract to teach school in Oxnard, a town north of LosAngeles. Bob had done his best to talk her out of going, but itwas about duty and commitment. She'd made a promise. A lot ofpeople break contracts, but not Lori. And that too is part of herstory with Parkinson's because she has a contract with that diseaseas well. But she will share that later.
During those nine months teaching junior high, Lori only sawBob twice. They spent almost all their money on long-distancephone calls. Bob called them "horny phone calls."
When he came out to California for Thanksgiving, heproposed and she accepted. Nevertheless, neither wanted to belonely, so they had an agreement that they could both keep datingother people, Lori in California and Bob in Ohio, to test theircommitment. "That gave me a few anxious moments, and I knowit did the same for him," Lori says.
In Lori's close family, the grandparents continued to play animportant role. After Bob visited her dad to request Lori's hand inmarriage, he went out to her grandfather's farm to ask him as well,as was the tradition in the family.
After Bob requested his permission, her grandfather said, "Iwelcome you to the family, but no little ones for the time being."Then Grandfather broke out some of his famous homemade wine,Bob pretended to like it, and the die was cast. So Lori came homefrom California.
They were both still very sure about each other and gotmarried on August 14, 1965, in Rocky River, Ohio. Lori wasraised "sort-of Lutheran," but Bob's family was very serious abouttheir Catholicism, so much so that the young couple had to bemarried in the Catholic church to make them happy. Even thoughLori's grandparents had basically been run out of Czechoslovakiaby the Catholics, they understood that this was her choice. Thelocal Catholic church Bob's family attended was very strictand wouldn't allow them to play the "Wedding March" for theceremony, but the service was lovely nonetheless.
The only problem was that the ceremony took place in the latemorning, and the reception wasn't until evening. It was the hottestday of the year, and she wore her wedding gown the whole time.With all those hours to kill, friends started drinking. By the timethe reception started, they were flying. Bob and Lori did their bestto catch up. Some of her sorority sisters took over these enormousdecorative cages in the reception hall so they could become go-godancers.
Lori says, "I am sure my parents were thinking, We paid forthis?"
After they married, Lori taught a year in Cleveland beforethey moved to Hartford, Connecticut, where Bob was transferred.There they spent the next fourteen happy years. Once settled, shepursued her love of literature in graduate school at Trinity College.She enjoyed her classes, but in one sense, Trinity was quite strange.Since it was still an all-men's college at the time, women graduatestudents were only allowed on campus at night. Lori quit just shyof her master's degree because they didn't have a lot of money atthe time. She went to work for Connecticut General for a fewyears, working in the group contract department writing insurancecontracts. She was proud that the English major was earning themoney for their first house.
All the while, she was trying unsuccessfully to get pregnant.After she had a small surgical procedure, "everything worked fine.Bob says it was because we got a new mailman."
Alyson, called Aly, was born in 1971, and Jennifer, calledJen, was born fifteen months later. Lori basically retired to takecare of the two babies. Bob was traveling a lot with increasingresponsibilities, so she was often on her own with the house andthe kids. While he worked incredibly hard to never miss a criticalevent in their lives and took red-eye flights to get home, it wasnecessary for Lori to be fully capable and independent.
She says, "Looking back on it, I was forced by circumstancesto develop skills and attitudes that have served me and us well,especially now as I fight my disease."
Even though they always missed Bob, the kids and Lori wereself-sufficient and hyperactive together. Aly says, "I remembergoing to yoga or exercise class with her. I remember that,even though I was very young. And I remember a lot of ourConnecticut summers being mostly with her. We belonged to acountry club, and she took us swimming there. What I think ofthe most was her just being a mom. There were times, because ofmy dad's job, that they also both traveled a lot together when wewere younger, and of course that was hardest on a kid. But evenwhen they went on these long trips, there were always surpriseshidden around the house. Things scheduled for us to do—always.She has always been a scheduler, a planner, the ultimate caretaker.She still has her calendar with everything that is going on everyday, just like a mom."
After the girls were in elementary school, she started a businesswith a female partner. They bought a six-acre piece of propertyand developed three houses on it. Her partner's husband was thecontractor. Lori's father had dabbled in real estate, and she hadobserved him doing all the work. "I guess I was following hisexample. Life was, on balance, complex but rich."
Bob was also finding his way as a businessman. By agethirty-six he had risen to vice president of marketing services forhis company and in 1978 was hired by GE Capital to be presidentof their insurance division, necessitating the family's move toRhode Island.
In the town of Warwick, in a charming section calledCowesett, on a hill overlooking the East Greenwich Cove, theyfound an old house they both loved. It was what is known as a"honeymoon house." Here is how it got that interesting name.In the nineteenth century, captains would go to sea for years at atime, whaling or trading with the Far East. When they returnedto Rhode Island with a substantial fortune, they would marryand take their brides to Europe. While they were abroad fortheir honeymoon, they would have their houses built, and hencethe name. The Patins' old honeymoon house was beautiful butneeded a lot of work. Restoring it was Lori's project. She hired thearchitect and the builders and supervised construction.
Then, nine years later, Bob got an even better offer tolead Washington National, a public diversified insurance andfinancial services company based in Evanston, a suburb ofChicago. After Bob checked out the company and was intriguedby the opportunity, he came home so he and Lori could talk tothe children. Aly was a senior in high school at the time. Theydecided they couldn't possibly move because she had just gottenherself really established and was doing well. It would have beendevastating to their daughter to have to start over in a new city atthis critical time in her life.
The Patins decided she would stay with the girls in Cowesett,and Bob would work in Evanston during the week but fly homeon weekends. The girls didn't find this arrangement much of achange from what they were used to. Aly said, "It didn't even seemlike a full year. It was, but we were adjusting, and he was cominghome pretty often." Actually, it seemed to Lori that he was homemore often than before; at least she could predict when he wouldbe home with more confidence—always the Friday afternoonflight from Chicago and the early Monday flight back. Threenights at home almost every week.
Aly, then off to Tulane, acknowledges that she was more of ahandful for her mother than Jen: "I talked back. Jen is much morelike my mom in that you don't give way to emotions, you just suckit up." Her first year in college, she had a hard time leaving home.Aly says, "Mother was very supportive of me and reassuring. Andthen I was the first daughter off to college, and I remember as ayoung kid, saying, 'You are going to go to college with me, right?'Like, 'I don't go by myself, right? You are coming with me?' AndI was thinking, I am never going to leave home ever. Then collegecomes around and I was terribly homesick. But she kept incontact constantly. I always got wonderful things in the mail, verythoughtful, making sure to keep in touch."
Lori adds, "That bonding with Aly created a specialrelationship that endures to this day and is a critical element in mysupport system as I deal with my health challenge."
So with Aly headed for college and Jen a junior in high school,their parents anticipated that all the commuting would end as theschool year finished. Jen and her mother would move to Chicagoto be with Bob so she would finish high school there.
But it didn't quite work out that way. When Jen's junior yearfinished, she realized she didn't want to move to Chicago for hersenior year either. She had become a really good field hockeyplayer—number-one scorer in the state—and there wasn't a lot offield hockey in Chicago at that time. So they made the sacrificeand committed to her as they had to Aly, that she should have theopportunity to stay in Rhode Island for that all-important senioryear. Bob agreed to commute for another year, living by himselfin the apartment one block from work. Lori says, "It was no meansacrifice on his part, either. Guys, despite their ability to hide it,get lonely too."
However, Jen actually loved that year alone with her motherbefore she went to college. She says, "Mom and I became reallygood friends during that time. My dad was home on weekends,but the rest of the time, it was just the two of us. We are suchgood friends now. I think it really was the beginning of creatingthat relationship for us."
Lori believes it is "a real, substantive relationship that sustainsme, and hopefully her, just like my relationship with Aly. Withlife's challenges come marvelous blessings."
During the time Bob was commuting, Lori kept herself verybusy. Because the nights were lonely after the girls went to bed,she decided to indulge in a hobby. She had always loved crafts, soshe used free time at night to design needlepoint and cross-stitchpillows. During Christmas, demand was so steep that shesometimes stayed up almost all night to complete orders. "My dayswere full, so full that I got a mother's helper one day a week to giveme some free time."
