Birds of prey tend to morph into different colors with each year’s molt. Here’s my watercolor of two hawks soaring in the Oregon sky. One is in its first year and the other is several years older.
It was a real pleasure to be interviewed recently for Larry Gifford’s podcast, “When Life Gives You Parkinson’s.” Larry has a fabulous radio voice and presence, and he brings interesting topics to the table. His partner, Rebecca, helps to guide the conversation with her insights and artful questions.
Larry talked with my co-author Kat Hill and me about our new book, Being Well with Chronic Illness, A Guide to Joy & Resilience with Your Diagnosis, which was just published by Hatherleigh Press. Our book is distributed by Penguin Random House. The heart of our book is the Wellness Spiral, which is a model that we developed to support being well after an unexpected diagnosis.
You can get “When Life Gives You Parkinson’s” anywhere you get your podcasts. If you feel it deserves it, like I do, be sure to subscribe and share.
When Parkinson’s makes you feel small, go big. Stand up tall.
When people don’t seem to hear you, and they say you mumble, enunciate. Make yourself heard.
When you are feeling defeated, go out and conquer.
When you are scared, be brave. Have courage.
When you feel all alone, remember there are people in this world — your spouse, your kids, your friends, your family, even strangers — who love you.
Credit to Coach Kimberly and the Rebel Fit Boxing Club
We may not be talking about rocket science, but deep brain simulation (DBS) is definitely brain surgery and it’s incredibly invasive. It’s the last hope of many people with Parkinson’s disease. It’s both a scary proposition and a beacon of hope.
That’s why it’s good news that two recent studies in the journal Nature Medicine show that electrical simulation can address brain function with surprising speed and precision. Scientists are now looking at DBS techniques for purposes other than Parkinson’s disease, including depression and anxiety. The more light that is shining on DBS, the better the outcome.
As reported in the February 28, 2021 edition of the New York Times Magazine, a team from the University of California, San Francisco, mapped a patient’s brain activity and programmed electrodes to detect when the patient was depressed. This works similar to how a pacemaker acts on the heart. When the patient is fine, the electrodes do nothing; when she’s depressed, they deliver stimulation in response.
In the second study out of Boston University, researchers used a noninvasive technique called transcranial alternating current stimulation to deliver pulses. Their goal was to reduce obsessive-compulsive behaviors. By using personalized brain stimulation, they reduced the number of these behaviors by 30% over three months.
Psychiatrists won’t be prescribing DBS any time soon, but this research offers news ways to think about treating brain disorders. It’s more evidence that “our brains are plastic,” according to one of the Boston researchers, “and we can rewire the brain.” Maybe in the not-so-very-distant-future, these less-invasive transcranial techniques will assist targeted brain treatments to stop Parkinson’s disease from advancing. Take that, rocket science.
It’s been eight weeks since the earth flipped around.
I’m still here, trying to hold steady. For me, it’s a time when nothing feels easy. I search for rhythm in my days. I create lists that peter out after two or three items. I try to finish something, anything.
Each night, I decide to make it a bright day tomorrow.
I remember the things that have saved me before. Writing in my journal. Meditating. Exercise. Friends. Breathing.
Yesterday, the sun came out. The neighbors gathered for a Sunday afternoon socially distant check-in in our yard.
I poured a small glass of wine and went out the front door.
There it was: a heart made of rose petals. A bit of whimsy created as a token of affection by a neighbor.
A gift from the earth. Gratitude, affection, hope.
I’m still here, holding steady.
Tai chi. Yoga. Boxing. Book club. Work, of course. Even my friends that get together for coffee every Monday and Friday morning. We all meet on Zoom now.
Zoom wasn’t even active in my lexicon eight weeks ago. At first it seemed like amazing technology, because after the first week of quarantine, I was desperate to see a real person.
I really miss seeing real people!
I don’t like how the camera is always on. I don’t need to see my reflection. I’m tired of living in Screen Land.
The news says it might be safe soon to relax some of the social distancing rules that keep us from being with each other. I don’t believe it’s safe yet. But it sure would be nice.
I caught my first glimpse of Oregon years ago on a February spring day. I was interviewing for my first job out of college and I heard the weather called “hiring weather.” This meant that fresh-eyed college kids like me would be easy to impress.
Was I! I was stunned by the sunny weather. And the blue skies. I could see snow-capped Mt. Hood and Mt. St. Helens on the horizon. I’d been warned that Oregon was mostly grey skies and rain, and that it would be a depressing, dreary place to live. Nobody had told me about this.
It was snowing when I left Colorado earlier that week. I was eager to take my next steps after school, very aware it meant moving away from home and taking on the work I had studied long to do. Even more than the sun, I was amazed by all the bulbs that were in bloom. Bright daffodils. Tulips. White and purple crocuses.
This morning, many years after I caught that first glimpse of Oregon, our yard is vibrant in yellow and purple with its annual show of February bulbs.
I believe this day is medicine, every bit as much as the Sinemet and Ropinerole that I take. I sit on the front steps and feel the sun on my face. As in-depth as science has studied dopamine, the only clear link I can find between dopamine and the sun is a theory that sunlight increases the number of dopamine receptors. This creates vitamin D which activates the genes that release dopamine. That’s good enough for me.
I think of the words of Thich Nhat Hanh: “You are a child of the sun, you come from the sun… and the earth is in you.”
Tomorrow is soon enough for the skies to be grey and rainy. Today I will read and sketch and make music and drink tea. Today is “hiring weather” and I want to hire whatever there is to hire. That includes several bright yellow bunches of daffodils out today, showcasing our yard.
In her memoir, “Are You Somebody?” author Nuala O’Faolain describes her common experience of being recognized in public but not being easily identified or named. People guessed that she was famous but they couldn’t say who she was. She would be in a lounge bar or the grocery store, and be asked “Are you somebody?”
Aren’t we all somebody? Even as we grow comfortable with our skin and the landscape around us, we can find it hard to listen to our own inner voice. As we get older, the possibilities of being “somebody” narrow down into a more slender path. We realize, for example, there will be no athletic career for us, nor are we likely to go into politics. Or acting or a host of other things.
Still, that’s not the kind of “Are you somebody” question that we’re asking. We’re all out here in our own little vessels, these aging bodies, these failing brains. It’s all we’ll ever have. As O’Faolain wrote, we’re not anybody in terms of the world, but then, “who decides what a somebody is? How is a somebody made?” O’Faolain believed she’d never done anything remarkable; neither have most people. Yet, most people, feel remarkable.
Recently I was slightly remarkable, or, rather I was mentioned in the newspaper. In the course of my work as a research librarian, I helped an elderly couple reunite with a lost wedding band. (You can read about it in the article below.)
The article was picked up by a couple of other news agencies and it was also reprinted later in the week. By that time, my name had been edited out of the story. I was remarkable and then I wasn’t.
There is a yoga practice where you say your given name out loud three times, and wait in a meditative pose. And sometimes people hear their own desires, their own small voice responds. It reassures us that we all are somebody, we all matter. The psychoanalyst Carl Jung warns us, though, that it is easy to deceive ourselves. I think that when we are able to be sufficiently quiet and our thoughts are open, there is no deceit. That’s when our still, small voice — the “somebody” that we are — can speak.
Let’s say you hear about a new drug or a research trial. Or you attend a conference. After hearing a particularly inspiring speaker, you may want to make some changes to your routines or diet or whatever, or do some of your own investigating. How do you get started? It can be overwhelming, but there are many tools available to help you become better informed.
Carry a small notebook
One good habit is to make notes about any topics that catch your interest. Write as soon as you can, while the information is still fresh. Describe who told you or where you first heard about it. You can make a note online, or send yourself a text.
Keep an eye on media
Most online and broadcast stations keep an index of previous subjects. If there was a newly-published book being publicized, you can check a website such as FreshFiction.com. They review the top “buzzed” books of the week on shows like Good Morning America, Today Show, NPR and Public Radio programs, and many more.
If it was a magazine article, use your cellphone to take a photo of the article and also snap the cover of the magazine that shows the date or edition. If it isn’t a magazine that you have at hand, check with your library to see if they can get a copy of the article for you.
Capture what you know, however little
Did you overhear people talking, say at the gym, but didn’t quite catch the details? Try to capture what you do know, or what it sounded like, to the best of your ability. The important thing is to get down enough information so that you can follow up.
Evaluate research results
You’ll need to read carefully the research that interests you. Studies can be flawed, or worse, make claims that their own research doesn’t support. I like to ask if something passes the “Reasonable Test” — does it seem reasonable?
Be wary of any articles that make outrageous claims. You’ll want to read and think carefully about what’s being presented. Is the source legitimate? Would you trust them under different circumstances? If it’s a new medicine, has it gone through rigorous testing? Was the research done on a large enough group of people? Keep track of the skeptical questions you have. It’s easy to fall for a false promise when one is eager for a cure.
Three years ago, I attended my first World Parkinson’s Congress (WPC) in Portland, Oregon. It went by in a blur. I had been recently diagnosed and I could barely take it in, but many things left an impression. Like the hallway displaying larger-than-life photographs of faces of people living with Parkinson’s. The wellness events filled with dancing and music. The plenaries and keynote speakers. Most of all, I remember the fellowship I felt from being surrounded by so many people with Parkinson’s.
Fast forward to the WPC 2019 in Kyoto. This time, I was giving a presentation with my dear friend Kat Hill that we titled “Resilience after a Diagnosis,” and we were traveling with a small community of friends from Portland. I knew that the trip would hold surprises that no amount of planning would cover — and that traveling was going to take some stamina.
When we first started planning, a photograph of bright reddish gates — called torii — at the Fushimi Inari shrine in Kyoto caught Kat’s and my imaginations. The gates seem to shimmer, catching the sunlight and rippling as if they were fabric instead of wood. Kat and I used the image of the beautiful torii at the end of a short video called Just Imagine that we made for the WPC 19 video contest.
“When we were young,” Kat and I expressed in the video, “we never imagined that we would travel the world” to attend an event like the WPC 19.
Once again, I came away from the conference with lasting impressions. I learned about current research on pluripotent stem cells, and the GI tract and gut microbiome, and I felt I had a valuable voice in the conversation as a person living with Parkinson’s Disease. I helped facilitate the well-received World Cafe conversations and exchanged ideas with people from Europe and Australia and Japan. One night, I went to hear sweet music performed by a Japanese folk singer, a Portland friend with Parkinson’s and her guitar-playing neurologist, and for the finale, the audience flooded the stage with appreciation.
WPC 19 changed my relationship with Parkinson’s Disease. I’m no longer just a person living with it. I’m eager to move into a larger advocacy role. The Congress opened doors for me and renewed my hope.
Like door ways, the torii gates are said to mark the transition from the mundane to the revered. Once the Congress was over, Kat and I wanted to visit the shrine that had so inspired us. Seeing the torii was to become a high point of a trip marked with many high points.
Even though we arrived early in the day, it wasn’t just us walking up the first steps at the Fushimi Inari shrine. There were hundreds and hundreds of visitors. We started climbing in lock-step with the crowd. There were young and old visitors, families, individuals, observant Buddhists, irreverent Americans. Occasionally someone posed for a photograph and the whole procession would stop.
Earlier, I had read that Fushimi Inari Shrine had 10,000 torii gates. We learned the hard way that there are actually over 32,000 torii gates and over 50 flights of stairs. Even when it appears that you have reached the top of the stairs, there are more to climb.
The lessons that I learned from all the unexpected stairs at the shrine were similar to the lessons I learned by attending the Congress. There’s so much we are trying to understand about Parkinson’s Disease. The more we learn through research and study, the more possibilities we have to reduce symptoms or discover a new medicine or — knock on wood, find a cure — and still there are new complications and surprises.
It took us more than two hours to reach the top of the Fushimi Inari Shrine. By then, the crowd had disappeared, leaving hardly anyone except Kat and me — two women with Parkinson’s — and our spouses and friends. We knew the path still held surprises and would likely tap all our energy. So we did what people do every day: we put one foot forward, and then the next. And we were amazed and thankful to do so.
— Arigato gozaimasu (thank you for reading).