Six months after my daughter Mimi was diagnosed with epilepsy, we finally had a breakthrough. I had told a friend, Barbara, how Mimi was struggling with the limitations of her condition. She just wanted to be a normal teenager – which means doing a lot of things that can cause her to have seizures. If she had been a little girl, I could have disciplined her to act within the limitations of epilepsy. If she were an adult, she would have the judgment to do so herself. Unfortunately, discipline and judgment are not teenage virtues. Barbara had a friend whose daughter, now in her late twenties, had come down with epilepsy as a teenager. Barbara put us together.
Talking to someone else with epilepsy was a revelation to Mimi. She heard this lovely young lady talk about how difficult it is to have seizures. How embarrassing. How she would be afraid of having one whenever she went to a party. She talked about going out and drinking and then having a seizure the next morning as the alcohol wore out of her system. She was so open with Mimi. Mimi hung on her every word. This young lady now only drinks one beer at a party and gave Mimi examples of witty comebacks when people ask why she isn’t drinking. Mimi walked away standing taller than I had seen her in a long time. For perhaps the first time, Mimi could see herself getting a grip on her condition.
Yesterday I had lunch with Barbara. I hope I was able to return the very great favor she did me two years ago. Someone very dear to Barbara also has seizures. I was able to share our experience with the drugs Mimi has taken. I hope it will help.
I reread Lori’s lessons. Two have made a very great difference in my life. The first is to be very honest about your condition. Lesson 8: Own and accept your situation. Don’t deny full ownership or lie to others about it. Being honest with yourself about your challenge allows you to confront it rather than to hide which just wastes time, energy and resources. Being honest with your friends draws not scorn or isolation but sympathy, prayers, resources and ideas to support your fight. You will be amazed at the forces that come your way if you just share your story. Because I was open and honest about what was going on with Mimi, Barbara could throw us a lifeline.
The second is to seek out friends and communities that will nurture you. Lesson 9: Seek out communities that will nurture you. Communities are an extension and reflection of the family and they enhance life. Belong to a community and it will celebrate with your joy and commiserate with your pain. You need the members of the community for support, and they need you as a good example. Expect to be responsible to and for the community, just as it is responsible to and for you. Isolation is a killer and inclusion is a savior. This applies to everyone, not just people struggling with medical conditions.
Although the subtitle of Lori’s Lessons is What Parkinson’s Teaches about Life and Love, it isn’t really about Parkinson’s disease. Parkinson’s is just the platform for Lori’s attack on the most difficult problem of her life. I first learned this two years ago when Bob emailed me about writing the Patins’ story. He said: “It isn’t really a story of Parkinson’s but a story of fighting anything thrown at folks and the kind of attitude, help and processes that all combine to deal with any challenge. Parkinson’s is just the platform.”
If I had to sum up all that I admire about Lori in one word, that word would be attitude. Her attitude is remarkable. She is absolutely forthright about telling people her limitations and needs but is never a drama queen. She doesn’t feel sorry for herself. She is determined to make the best of her life and if she doesn’t find the right way to do it the first time, she will find another way. “I am absolutely determined that this is not going to get to me. I will not let Parkinson’s control my life. My destiny is still in my own hands.”
Bob explains, “I was trained long ago in the world of work that you can use any situation to your advantage if you approach it the right way. In this case, with Parkinson’s, we say to ourselves, “We acknowledge that this is ugly, but how do we actually make it work for us?” How do we force ourselves to get into a mindset that says that we can turn this ugly situation to our advantage by thinking about it creatively?”
Lori has thought really creatively and draws upon every resource to take
a 360-degree approach to her problem. Her attack on Parkinson’s is like a wheel crushing down on the enemy. She uses medicines (the rational approach), the spiritual approach, friends and family (the community approach), diet exercise and sleep (the physical approach) and the assistance of caregivers.
Sometimes my husband and I come home from a party just as my children are going out. Well I remember being young and staying out late. Now, in the prime of my middle age, I cannot imagine anything worse. As far as a mood elevator, a good night’s sleep is my drug of choice.
I have made some radical changes in lifestyle in the last ten or twelve years to support my sleep habit. The most difficult change was giving up coffee. I do love a good cup of java. In the old days, coffee was my reason for getting up in the morning. But I read an article that said I would lose ten pounds if I switched from coffee to green tea. (I did lose nine pounds, but that’s another story.) The first two weeks I had terrible headaches. Caffeine is a vasodilator so I guess all the veins in my brain were constricting. Nevertheless I persisted coffee-less because I realized the immediate benefit of not waking up to pee so often. How sweet it is to sleep through the night.
Another change I made is going to bed at the same time every night and getting up at the same time every morning. I clock out between nine and ten and bound out of bed between five-thirty and six. Too early for most, but it works well for me. I sleep so much better than the old days when I would stay up past midnight and then try to sleep in. Light and noise just interrupt my shuteye once the day dawns.
Lori puts a high priority on sleep too. It is one of the spokes of her wheel of attack on Parkinson’s. Parkinson’s Disease messes with sleep big time. P.D. can cause R.E.M (Rapid Eye Movement) Sleep Disorder that creates unique sleep disturbances where people act out their dreams. To them, their dreams are real. When people have this symptom of Parkinson’s dream, it’s not passive. In Lori’s case, sometimes she talks a lot; others she does what she is dreaming. Bob says, “Once I woke her up because she was choking me with the chord from my sleep apnea device. When I asked her why, she said, ‘You’re the dog. I am taking you for a walk.’” It was nothing personal.
Lori’s Parkinson’s specialist, Dr. Michael Rezak, said his patients who do everything right live well longer – everything right means: getting exercise, taking meds and sleeping well. Lori works hard to get enough sleep: “I need a really good night’s sleep so I oftengo to bed at nine. It’s not even dark in the summer. I try to get eight to nine hours a night. If I get eight hours, I am in fine shape but nine is luxury. I take a half hour to finallyget up so I try to wake up slowlyand start flexibility exercises in bed. When I get up really slowly, then I am alsoless likely to have breathing or balanceproblemsas the day begins. As with most people,I am not fullyrested if I don’t get enoughREM sleep.”
My father died form Alzheimer’s and now my mother has dementia. With this genetic inheritance, I read everything I can about taking care of your memory. Yesterday I posted a list of foods that improve memory: salad oil, fish, dark-green-leafy vegetables, avocados, sunflower seeds, peanuts, red wine, berries, and whole grains. I was mildly shocked because I eat all these foods except sunflower seeds as much as I can because I like them. Better double down on sunflower seeds.
I also do Sudoko every day. Research says Sudoko and crossword puzzles make new memory connections. “My guess is that playing them activates synapses in the whole brain, including the memory areas,” says Marcel Danesi, PhD, author of Extreme Brain Workout. Whereas scientists used to believe brain development was static after a certain age, they now recognize neuroplasticity – the brain can develop new pathways. Games and memory exercises encourage neuroplasticity.
Lori is well aware that Parkinson’s can lead to memory problems so she exercises her brain just as she does her body. She says, “To exercise my memory I play bridge twice a week for three hours at a time. And that has helped a lot because there is so much memory in the game. When I was in the hospital, someone brought me Suduko, a game of number patterns. That’s good for your memory too. I do more reading than I used to, which also helps me with words I can’t come up with. I went to a store called Marbles that sells games, mental exercises and other tools for your mind. I bought a memory game that is about an art auction where different things are auctioned off and they are all pre priced. You have to remember what the pre price was and what the final auction price was. All of these may not protect my ability to function intellectually, but they surely seem to help. And, you know what? They’re fun. I’ve learned that if I can make mental exercises fun, I’m far more likely to do them.”
I did not aspire to be a caregiver, but that is what I have become. I have balked and struggled, but I want to do my best to help two women, one very young and the other very old.
Last year I became a caregiver for my 17-year-old daughter when she was diagnosed with epilepsy. Two days after we got back from dropping her off at college, my 92-year-old mother had a stroke, and later a heart attack and a bleeding ulcer. Now I am taking care of my dear mother too.
From Lori and Bob, I have learned that caregiving is a love story. She says Bob reminds her of the gospel song: “He walks with me, and he talks with me and he tells me that I am his own,” even though this of course refers to a much greater love and power than the human. You give care for someone because you love her or him. You take on the task rather than delegating it because this is not a job. It is life.
Caregiving is a dance where the person giving care and the person receiving it wrap their arms around each other and move in time together to the music. Bob says that it is important for the person being cared for to respond with love. “You must love the people who love you. Their love and care demands reciprocity. You can’t just expect or demand or even accept their love and care without convincing them that you love them back. If nothing else, just tell them.”
The dance of caregiving is not a grim duty. The caregiver both gives and receives joy, as does the person being cared for. Lori advises: “Make constant ‘deposits’ into your energy bank accounts with hugs, sunrises, and laughs. They will allow for big withdrawals when you get hit with the unexpected.”
in my next blog.
Lori’s Lessons is a memoir and it isn’t. While it does tell the story of Lori Patin’s life and of her long battle against Parkinson’s, that is not really what it’s about.
In a nutshell the story is that after fifteen years of Lori vs. PD, Parkinson’s was winning. Lori lay in a coma. Her family and friends thought the best they could hope for was for their sweet wife/mother/friend to come home in a wheelchair with a nurse. Instead she is playing golf and dancing.
Parkinson’s does not go into remission. Except for Lori. Seventeen years after being diagnosed, she is better than she was twelve years ago. Recognizing that she has been blessed with a miracle, Lori believes God wants her to do something with her story. She wants other people to know how she did it. She wants to inspire them to believe that they can do it too because she did.
Not that she is promising remission. Her doctor, Michael Rezak, MD, PhD, is a nationally known Parkinson’s specialist. He has seen nothing like it before and knows of no other example in the literature.
And Lori’s story is not just for Parkinson’s patients. It is for anyone who faces a major challenge. The principles she uses to fight PD work against other all-encompassing problems.
The Patins and I wanted to meet. They wanted to figure out if I was the one to write Lori’s story. I knew I admired Lori’s struggle against Parkinson’s, but did I want to spend a year of my life writing about it?
When we first met, Bob very wisely decided that we should not get together on either of our home turfs, but on neutral territory halfway in between St. Louis where I live and Chicago where they live. He calculated the distance between the two cities and divided it in half. The closest city to the halfway point was Normal, Illinois, home of Illinois State University.
Between the time that we made the date in Normal and the day we arrived there, my daughter was diagnosed with epilepsy. I was still reeling from shock. A teacher had contacted us to tell us about staring spells, but then she had a full out grand mal seizure. What did this mean? Would she be safe? How did she live her life with this disease? How could I help her? She was at the worst possible age to receive a diagnosis of epilepsy. She wasn’t a child so that I could manage her care. She wasn’t an adult who would take a reasoned approach to managing it herself. She was a teenager, rebellious, pushing the limits. She kept saying, “I just want to be a normal kid.” Doing some of the things normal kids do is very, very dangerous for someone with her condition.
And then I met Lori and Bob. How lovely she is. How much they care about each other. How much her struggle mirrors my daughter’s. How much Bob’s struggles mirror mine. It was fate that brought us together at this critical time. Like Lori, I can say from the bottom of my heart that I am a very lucky person within a very unlucky situation. Her story has enlightened my life.