When Lori Patin first received her diagnosis of Parkinson’s at age fifty-five, she wanted to cry until she died. When she made up her mind to fight the disease, her husband and caregiver, Bob, took a stand beside her. In Lori’s Lessons, author Carol Ferring Shepley tells the story of the Patins’ love throughout the course of the disease and how it affected their lives.
But this memoir is about much more than Lori’s struggle against Parkinson’s disease, a progressive, incurable, degenerative disorder that affects the central nervous system. It’s also the story of someone who has faced a terrible challenge, met it head-on, and refused to concede. In the struggle, she has learned vital lessons about life itself.
Lori’s Lessons shares how for fifteen years, Lori fought relentlessly, but in the summer of 2011 she lay in a coma. At the time, Bob thought the best he could hope for was to bring her home with a nurse. Thanks to a miraculous remission, however, today she doesn’t even have tremors.
Offering inspiration and hope, Lori’s Lessons presents a 360-degree perspective on how Lori attacked the disease. She has taken many pharmaceuticals, but the two strongest drugs in her regimen are hope and faith.
|Product dimensions:||8.60(w) x 5.40(h) x 0.50(d)|
Read an Excerpt
What Parkinson's Teaches about Life and Love
By Carol Ferring Shepley
iUniverse LLCCopyright © 2013 Carol Ferring Shepley
All rights reserved.
Lori Patin says, "I am a very lucky person—within a very unlucky situation. You might find it strange that I say this considering that I have had Parkinson's disease for more than fifteen years. Perhaps you will come to agree when you get to know me better. While I would surely love to be free of this disease, there have been blessings along the way. And hope ahead. if you or someone you love faces something awful, something that tries to tear your world apart, I offer my story in the hope that you will find encouragement here."
She was born Lori Cedik in 1942 outside Cleveland, Ohio. All four of her grandparents emigrated from Czechoslovakia. Her husband, Bob, likes to say she is a pure-blooded Bohemian—unique and exotic in his imagination. Not surprisingly, her family was very "old school," in the European sense. Her parents were strict, and as part of their family culture, they spent a lot of time together with grandparents. Both her mother's and father's parents lived on farms. Her younger brother, Don, and she, along with their parents, spent almost every weekend visiting one set of grandparents or the other. Sometimes they would just go for a meal, but often they would stay over Saturday night.
While Lori's mother's parents did not earn their living by farming, her father's parents had a very successful farm, with large orchards, where they grew apples, peaches, plums, and cherries. Their family often helped Grandfather with harvests because he needed extra hands.
He also had a vineyard and even made his own wine. For special occasions, he went down to the dirt-floor cellar and took a dusty bottle from under the stairs. When he took the top off the bottle, 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-date agricultural methods, including spraying his apple trees to protect against disease and blight.
Unfortunately, those "happy days" have come back to haunt Lori. Parkinson's disease occurs more frequently in farm families. Experts find an increased incidence among people with exposure to agricultural chemicals.
Lori Cedik was a good student and the kind of child who liked to please her parents and teachers. She was diligent and determined early on that she wanted to go to college. Today, a family would be proud of a daughter with ambitions like that, but Lori's parents, especially her father, were shocked. No one in her family had a higher education except the father, who had gone to a kind of engineering trade school. When she told him she wanted to become a lawyer, he said, "No. Girls are not lawyers. Girls are mothers."
So, painfully and reluctantly, Lori put that dream aside but would 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 and living expenses herself. Yet when the time came, he paid for them anyway. He was "old school" and stubborn, but in the end, his love for Lori trumped a long-held bias toward women. Father and daughter both ended up growing through the experience. Lori was proud of him for changing his chauvinist ways, and in turn, he taught her a lesson about the importance of changing long-held beliefs when it matters for someone you love.
When Lori graduated from Muskingum University, he was also 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 about his daughter who graduated from college, the first person in our family to do so," she said.
At Muskingum, Lori met Bob Patin, her "current and only husband." She says, "I have to admit that at first I did not care for him at all."
Freshman year they went with a group to ski in Pennsylvania. Even though everyone was all jammed into one small car, Lori didn't speak to him. "I made up my mind he was full of himself—without even saying a word to him." She kept running into him at different things over the course of the next two years, but she always thought, Oh my gosh, somebody ought to tell him that he isn't as great as he thinks he is.
To be completely candid, however, Bob thought Lori was "a gorgeous but snotty broad who dated all the wrong guys in the wrong [i.e., rival] fraternity." As it turned out, they both were in for a surprise.
Senior year, needing a date for a concert, Bob asked one of his best friends, Terry, for ideas because Bob's then-girlfriend had just given him back his fraternity pin. Terry suggested Lori because he knew she had also just been through a breakup so she would be available. When he called, Lori didn't want to seem overanxious. In fact, she probably wouldn't have gone at all if she hadn't just broken up with her boyfriend. Also, Bob invited her to a Four Freshmen—her favorite group—concert.
Lori says, "Then I did a terrible thing. I debated whether I should accept him or not with my sorority sisters. While he was still on the phone! Holding the receiver out so he could hear!"
"Pretty demeaning," Bob says. The consensus among the sisters—which Bob heard—was, "What do you have to lose?"
Bob had to get back at her somehow. So when he showed up at the Delta Gamma Theta house, he brought dead flowers. It looked like a bush.
She thought this was hilarious. "It was the best date of my entire life."
What a shame. It was April, almost the end of their senior year, and they had wasted all that time disliking each other. From then on, they spent every possible minute together. It was frenetic, attending fraternity parties, going to movies, even doing silly things like cow tipping (big in Ohio!). In fact, they enjoyed themselves so much that Bob almost flunked trigonometry.
Lori says, "Good thing he managed to pass, because without it, he wouldn't have graduated. We even broke the Delta Gamma Theta rules big time by meeting on the sorority house fire escape after hours. He didn't have a lot of sense: he wore a bright white shirt and white shorts on a night with a full moon. It was as if he wanted to attract the campus police's attention."
"Courage trumps intelligence," Bob says. "And hormones do too. We had a lot of chemistry going for us."
They even went "turfing," where you sneak out to the fifty-yard line on the football field and get personal. "My father had been so strict with me that I was grounded if I was as much as five minutes late coming home from a date. I thought, Dad, you ought to look at me now."
Lori says, "I guess I tripped over the line into respect for Bob when, 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 really responsible. 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 home for that summer of 1964 after graduation, they got to see each other all the time for several months. He shared a one-bedroom apartment with nine other guys. They cleaned it twice a year, whether it needed it or not. You couldn't even see the floor of the kitchen. One time she said she would make dinner for him. It took her about two hours to get the kitchen clean before she could cook because it was stacked with pots and pans—"dirty, all of them dirty."
Time was fleeting and precious, but come August, they both knew she was going to leave home and drive out to California on Route 66 with her sorority sister and roommate-to-be. She'd signed a contract to teach school in Oxnard, a town north of Los Angeles. Bob had done his best to talk her out of going, but it was about duty and commitment. She'd made a promise. A lot of people break contracts, but not Lori. And that too is part of her story with Parkinson's because she has a contract with that disease as well. But she will share that later.
During those nine months teaching junior high, Lori only saw Bob twice. They spent almost all their money on long-distance phone calls. Bob called them "horny phone calls."
When he came out to California for Thanksgiving, he proposed and she accepted. Nevertheless, neither wanted to be lonely, so they had an agreement that they could both keep dating other people, Lori in California and Bob in Ohio, to test their commitment. "That gave me a few anxious moments, and I know it did the same for him," Lori says.
In Lori's close family, the grandparents continued to play an important role. After Bob visited her dad to request Lori's hand in marriage, 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, "I welcome 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 home from California.
They were both still very sure about each other and got married on August 14, 1965, in Rocky River, Ohio. Lori was raised "sort-of Lutheran," but Bob's family was very serious about their Catholicism, so much so that the young couple had to be married in the Catholic church to make them happy. Even though Lori's grandparents had basically been run out of Czechoslovakia by the Catholics, they understood that this was her choice. The local Catholic church Bob's family attended was very strict and wouldn't allow them to play the "Wedding March" for the ceremony, but the service was lovely nonetheless.
The only problem was that the ceremony took place in the late morning, and the reception wasn't until evening. It was the hottest day of the year, and she wore her wedding gown the whole time. With all those hours to kill, friends started drinking. By the time the reception started, they were flying. Bob and Lori did their best to catch up. Some of her sorority sisters took over these enormous decorative cages in the reception hall so they could become go-go dancers.
Lori says, "I am sure my parents were thinking, We paid for this?"
After they married, Lori taught a year in Cleveland before they moved to Hartford, Connecticut, where Bob was transferred. There they spent the next fourteen happy years. Once settled, she pursued 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 graduate students were only allowed on campus at night. Lori quit just shy of her master's degree because they didn't have a lot of money at the time. She went to work for Connecticut General for a few years, working in the group contract department writing insurance contracts. She was proud that the English major was earning the money 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, called Jen, was born fifteen months later. Lori basically retired to take care of the two babies. Bob was traveling a lot with increasing responsibilities, so she was often on her own with the house and the kids. While he worked incredibly hard to never miss a critical event in their lives and took red-eye flights to get home, it was necessary for Lori to be fully capable and independent.
She says, "Looking back on it, I was forced by circumstances to 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 were self-sufficient and hyperactive together. Aly says, "I remember going to yoga or exercise class with her. I remember that, even though I was very young. And I remember a lot of our Connecticut summers being mostly with her. We belonged to a country club, and she took us swimming there. What I think of the most was her just being a mom. There were times, because of my dad's job, that they also both traveled a lot together when we were younger, and of course that was hardest on a kid. But even when they went on these long trips, there were always surprises hidden 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 every day, just like a mom."
After the girls were in elementary school, she started a business with a female partner. They bought a six-acre piece of property and developed three houses on it. Her partner's husband was the contractor. Lori's father had dabbled in real estate, and she had observed him doing all the work. "I guess I was following his example. Life was, on balance, complex but rich."
Bob was also finding his way as a businessman. By age thirty-six he had risen to vice president of marketing services for his company and in 1978 was hired by GE Capital to be president of their insurance division, necessitating the family's move to Rhode Island.
In the town of Warwick, in a charming section called Cowesett, on a hill overlooking the East Greenwich Cove, they found 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 a time, whaling or trading with the Far East. When they returned to Rhode Island with a substantial fortune, they would marry and take their brides to Europe. While they were abroad for their honeymoon, they would have their houses built, and hence the name. The Patins' old honeymoon house was beautiful but needed a lot of work. Restoring it was Lori's project. She hired the architect and the builders and supervised construction.
Then, nine years later, Bob got an even better offer to lead Washington National, a public diversified insurance and financial services company based in Evanston, a suburb of Chicago. After Bob checked out the company and was intrigued by the opportunity, he came home so he and Lori could talk to the children. Aly was a senior in high school at the time. They decided they couldn't possibly move because she had just gotten herself really established and was doing well. It would have been devastating to their daughter to have to start over in a new city at this 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 home on weekends. The girls didn't find this arrangement much of a change from what they were used to. Aly said, "It didn't even seem like a full year. It was, but we were adjusting, and he was coming home pretty often." Actually, it seemed to Lori that he was home more often than before; at least she could predict when he would be home with more confidence—always the Friday afternoon flight from Chicago and the early Monday flight back. Three nights at home almost every week.
Aly, then off to Tulane, acknowledges that she was more of a handful for her mother than Jen: "I talked back. Jen is much more like my mom in that you don't give way to emotions, you just suck it up." Her first year in college, she had a hard time leaving home. Aly says, "Mother was very supportive of me and reassuring. And then I was the first daughter off to college, and I remember as a young 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?' And I was thinking, I am never going to leave home ever. Then college comes around and I was terribly homesick. But she kept in contact constantly. I always got wonderful things in the mail, very thoughtful, making sure to keep in touch."
Lori adds, "That bonding with Aly created a special relationship that endures to this day and is a critical element in my support 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 the school year finished. Jen and her mother would move to Chicago to be with Bob so she would finish high school there.
But it didn't quite work out that way. When Jen's junior year finished, she realized she didn't want to move to Chicago for her senior year either. She had become a really good field hockey player—number-one scorer in the state—and there wasn't a lot of field hockey in Chicago at that time. So they made the sacrifice and committed to her as they had to Aly, that she should have the opportunity to stay in Rhode Island for that all-important senior year. Bob agreed to commute for another year, living by himself in the apartment one block from work. Lori says, "It was no mean sacrifice on his part, either. Guys, despite their ability to hide it, get lonely too."
However, Jen actually loved that year alone with her mother before she went to college. She says, "Mom and I became really good 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 such good friends now. I think it really was the beginning of creating that relationship for us."
Lori believes it is "a real, substantive relationship that sustains me, and hopefully her, just like my relationship with Aly. With life's challenges come marvelous blessings."
During the time Bob was commuting, Lori kept herself very busy. Because the nights were lonely after the girls went to bed, she decided to indulge in a hobby. She had always loved crafts, so she used free time at night to design needlepoint and cross-stitch pillows. During Christmas, demand was so steep that she sometimes stayed up almost all night to complete orders. "My days were full, so full that I got a mother's helper one day a week to give me some free time."
Excerpted from LORI'S LESSONS by Carol Ferring Shepley. Copyright © 2013 Carol Ferring Shepley. Excerpted by permission of iUniverse LLC.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
Chapter 1: Lori's Life, 1,
Chapter 2: The Crisis, 17,
Chapter 3: Medicine, 34,
Chapter 4: Family and Friends, 47,
Chapter 5: Caregivers, 68,
Chapter 6: exercise, Diet, and sleep, 89,
Chapter 7: spirituality and Attitude, 101,
Appendix: Cheryl Becker's Log of Lori Patin's surgeries, Accidents, and Difficult events, 121,
Lori's Lessons, 125,