This week I had a wonderful almost-surprise visit from a friend named Sandy Disner who is a professor of linguistics at USC. On the way to the airport we started talking about language acquisition in children. Just as we reached the drop-off point, Sandy told me that research shows being bilingual forestalls Alzheimer’s four years. With my family history – a father who had Alzheimer’s and a mother with dementia, I got really interested and texted her later to find out the name of the researcher.
Canadian neuroscientist Ellen Bialystock used MRIs to study older, bilingual adults in various stages of Alzheimer’s. In an article in the Manchester Guardian Bialystock reports, “We did a study at the Baycrest geriatric centre in Toronto in which we identified 200 clear cases of Alzheimer’s disease and looked at the patients’ backgrounds to see if they were mono- or bilingual. Then we looked at how old they were when the family noticed something was wrong and when they were formally diagnosed. In both cases the bilinguals were significantly older, by about four years.” She goes on to say, “We did a second study with 20 monolinguals and 20 bilinguals, all about 75 years old. They had all been diagnosed with Alzheimer’s, and they were at exactly the same cognitive level, so you would expect them to have the same level of damage in the medial-temporal cortex. But when we looked at their brains, we found that the bilinguals had significantly more damage than the monolinguals. They had more advanced Alzheimer’s but they were functioning at the same level. That’s the advantage: they could cope with the disease better.”
Not all of us have the opportunity to be bilingual, but Bialystock goes on to say that this research suggests that learning a language late in life is probably beneficial “not because of bilingualism but because learning a language is a stimulating mental activity and a good way to exercise your brain.”
It is exciting to learn that there are things you can do to slow the process of dementia taking over your brain. Lori Patin knows this intuitively and is fighting back. Parkinson’s can cause dementia as the disease progresses, but she is doing everything she can to prevent that from happening. While she exercises her body four hours a day, she also does regular brain workouts. She plays bridge twice a week because this card game requires you to remember all the cards that are played. Just as she strengthens her muscle by lifting weights, she improves her mental capacity by playing bridge and other games that require memorization.
Two weeks ago I had that dream, the dream that’s most people’s worst nightmare: speaking in front of an audience. (At least I wasn’t naked.) In fact, I woke up feeling great. I had been worrying about what to say and my dream told me. I awoke knowing just how to write my speech. It seemed like a miracle to have my dream do my work for me.
Lori, Bob and I were scheduled to speak about Lori’s Lessons at the Book Stall in Winnetka May 4. I so wanted to do a good job for the Patins that nothing I wrote seemed good enough. The dream dispatch was a gift from my subconscious. It didn’t come as word-for-word text, but as a message to be straightforward, to tell why Lori’s story is so great and to say what a privilege it has been to tell it. This may sound obvious now, but it wasn’t before my subconscious gave me the dream.
I am a great believer in the power of the subconscious. When I was in college, I procrastinated about writing papers. The night before they were due, I would read through all my notes and then get a good night sleep. When I woke up, I would sit down at the typewriter and type my paper like magic. While I slept, my subconscious organized all the material, figured out what was most important and tied it all together.
My main problem with speaking about Lori’s Lessons was getting started. I usually open by telling of the blessings the Patins have brought to my life. Between the time that we set up our first meeting and the time we met, my daughter was diagnosed with epilepsy. Lori’s story, her wheel of attack against her disease, has helped me teach my daughter how to stand up to her neurological disorder. Bob’s words of wisdom about caregiving have inspired and strengthened me as I care for her. My daughter gave me permission to tell her part of the story in the book, but I knew she would not want me to discuss it when she was in the audience. That caveat had blocked me from writing the talk I wanted to give. My dream straightened me out: I didn’t need to tell my story.
I love a book by Rollo May entitled The Courage to Create. In it, he said: “The value of dreams…is not that they give a specific answer, but that they open up new areas of psychic reality, shake us out of our customary ruts, and throw light on new segments of our lives.” You just have to be ready to receive the message.
Last night I took my husband Jake to Blueberry Hill for his birthday. We were able to see Chuck Berry perform in the Duck Room after trying to get tickets for five or six years. Since Chuck performs only once a month, you have to gp online immediately as soon as sales start to buy tickets. It was worth the wait: Chuck is 87 and still rockin’ and rollin’. I loved his music when I was a teenager and he was wild and free. I loved him yesterday too. This is certainly a tamer Chuck than the guitar legend. We sat front-row-center and could see how management puts a list of songs with keys in huge letters on the floor. He got the key wrong once anyway to the annoyance of Charles Berry, Jr. who performs along with his Dad and sister Ingrid. Right key, wrong key, April 23rd was Chuck’s 203rd consecutive performance at Blueberry Hill. How cool is that?
A lot of people his age would be resting on their laurels with their feet up in front of the television. Instead he is singing and playing the guitar for over an hour, sweating under the hot stage lights. Even putting one foot out and sliding on the other in a modification of the dance he pioneered – the “Duck Walk.”
That’s why I admire Lori so much. Like Chuck who won’t let the diagnosis of advanced age put him out to pasture, she is living her life to the fullest despite the diagnosis of Parkinson’s. When she first heard she had the disease, she says, “I felt like I just wanted to sit in a corner and cry until I died.” Then something powerful happened. She realized Parkinson’s would never kill her, so she determined to make the absolute best of her life. And she has. “I can choose to not let this get to me. And, if it does, then I can figure out another way to fight. And another way after that. I can beat this.”
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.”
I learned long ago that I think better after I exercise so I do my best to get some form of vigorous activity before I write. I try to exercise every day, but many weeks I can only do six days. Three times a week I practice a workout routine with a half hour on the bike, plus weights, crunches and stretches. I mix it up with yoga, tennis and three-mile walks with friends. I feel like it gets the blood pumping to my brain.
Since I figured this routine out myself, I was deeply interested to learn that exercise is a key part of Lori’s attack on Parkinson’s. Her specialist, Dr. Michael Rezak, says that Lori’s exercising has definitely slowed the progress of the disease. Lori dedicates four hours a day to exercise. She stretches when she gets up. For endurance and strength, she walks on the treadmill and lifts weights. Ballroom dancing and tai chi improve balance. Lori plays the harp develops finger control so Lori can help prevent the trembling hands that are a symptom of her disease. As a former aerobics instructor, all this comes naturally to Lori. While P.D. has taken away many things she liked to do, like biking, skiing or roller blading, but she is so much better that she can play golf again.
We were pleased to read that Dr. Dennis Keane, physical medicine and rehabilitation physician, thinks a dedicated exercise program will not only control the symptoms of Parkinson’s but may slow its progression or even prevent its manifestation. He says, “Our brains have neuroplasticity. That is, with activities such as exercise, we stimulate our brains to create new nerve pathways to take over the role of what we may have lost from a neurological disorder.”
I have Alzheimer’s in my family. I hope the same goes for Alzheimer’s.
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 Patin brings so many wonderful qualities to her struggle against Parkinson’s – strength, persistence, determination. Still the quality that impresses me most is her attitude. Now attitude is a very difficult quality to pin down. The best way I can describe Lori’s attitude is to show a great example – her attitude towards hallucinations, a common side effect of Parkinson’s meds.
“One funny thing was that I started having hallucinations,” Lori told me. “I know that sounds really quite odd that I find those funny, and my family certainly was not laughing, but I wasn’t scared at all. I would get to talk to my father who has been dead for years or to my brother who lives in Ohio. Or I would see lots of animals, dogs, coyotes, even a zebra. Once I told Aly that she was in the living room delousing a zebra. You have to laugh at that one. These hallucinations weren’t transparent; they had form and shape and were as three dimensional as you or I. They didn’t scare me because I knew they were hallucinations, partly because it wasn’t logical to have my dead father in the family room or a zebra in the living room and partly because I just knew it was not real.”
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.