When Parkinson’s Makes You Feel Small

Credit to Coach Kimberly and the Rebel Fit Boxing Club

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


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.

Fog over Tilikum Crossing

Here it comes

Little darlings, it’s been a long, cold, lonely winter. It seems like years since it’s been clear.

Our Covid-19 numbers are going down! Once we receive a vaccine and give it time to work, we are told we can start getting together in small groups outside.

Little darlings, I feel that ice is slowly melting. I wonder if we will know what to do with our new freedom.

Yesterday Rob and I took a drive to Sauvie Island. The birds were out in force — snow geese, sandhill cranes, a pair of tundra swans, soaring eagles and kestrels up high on wires — and the sunshine.

Blue sky ahead

We were standing on a bird-watching platform when another couple joined us. Masked and respectfully keeping our distance, we all kept looking at birds and Rob clicked a few photographs.

“Nancy?” the woman finally asked.

We studied each other for a moment. “Karen?” I said.

We pulled down our masks briefly to verify who we were and then put them back up. I’m not vaccinated and I’m determined to get to the Covid-19 finish line without getting anyone sick. But it was fantastic to see my dear friend in real life! She has been one of the foundational blocks of my year in quarantine, showing up every week for coffee at 8:30 on Monday mornings via Zoom.

I don’t think I can understate how valuable it has been during dark and cold days to have friends that show up. Soon we’ll take off our masks, for real, this time, and spend some time together, for real.

Here comes the sun. And I say, it’s alright. It’s alright.

Targeting the Brain

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.

Renewed 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.

Stand as you are able

These are hard times. We all have reasons to hold ourselves back. Still, every morning we wake up to one more day, until the day we don’t. We have every freaking day. So we try to make some small part of our world a little better. We educate ourselves about nuanced issues. We talk, and our conversations sometimes lead to our heart and our best intentions. We become advocates for our self and for others. We stand as we are able.

An advocate publicly supports or suggests a new way forward.

Take a look at the house of my dear friends who live down the street. Their place is a freakingly humble example of advocacy. There’s a no-charge pay phone and a hand-washing station, and it’s not unusual to walk by any hour of the day and see someone using one or both. There are photos of Black men and one Black woman who died while in custody. There’s a rainbow peace flag.

Now take a look at the free food table. This perishable food is donated by Trader Joe’s and Whole Foods via Central City Concern. It serves people in our neighborhood who have lost their jobs and are running out of things.

People are encouraged to stop by the table or pass the information on to anyone who might need it.

Some days there’s fresh milk and bagels. Or potatoes. Heads of broccoli, snap peas.

Once I snagged a Snickerdoodle.

At the end of the day, if there’s a lot of perishable food left, there might be a barbecue and dinner is served.

If you want to know more about the people who live here, ask me. I feel protective of their privacy and, also, this is their hard work, not mine.

All this leads to a simple question. What can we — what can I — do to be a better advocate for our selves, our world and the things we believe in, despite what holds us back? Stand as you are able. It’s a new freaking day.

Holding steady

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.

Who’s zoomin’ who?

Life in the time of SARS-CoV-2

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.

The first rule of fight club

“The first rule of Fight Club is you do not talk about Fight Club.”

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Ken helps Harry put on gloves

Clearly Chuck Palahniuk wasn’t talking about Parkinson’s Boxing. The first rule of Parkinson’s Boxing is you tell any one that it might help. Because Parkinson’s Boxing takes people challenged by a chronic illness and builds them into a fighter.

Exercise is literally the only tool we have to slow the progression of the disease. We’re fighting for our lives.

Recently three of us, Kat, Harry and I, were invited to work out at a Rock Steady class in Kauai. There we met some remarkable fighters. The class was similar to the one that Kat and I attend in Portland, Kimberly Berg’s Rebel Fit Club, which is dedicated to people with Parkinson’s and other movement disorders.

Our workout was similar: weights, speed bag, ropes. The view looking out at Kauai’s luscious green hills was magnificent. We were even invited to spar.

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Sparring with Coach Ron …
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and contact!

Here’s the whole group of fighters at the end. It was a pretty sweaty group.

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That’s Kat, bending down behind Harry, Coach Ron next to Harry, and me in the blue. Behind my right shoulder is our new friend and boxing hero Lisa who we hope to see in Oregon this summer. Actually we’d be happy to see any of these kind people come visit us.

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We’re brave. We’re mighty.

Hiring weather

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.

Invisible disabilities

I recently went on a weekend trip to the coast with a group of friends. We stopped at the Tillamook Cheese Factory to stretch our legs and let ourselves be tempted by the local ice cream.

We looked like everyone else there, except some of us have Parkinson’s. Some of our symptoms are obvious but for the most part they are unremarkable. None of us consider herself to be disabled, even if we have a progressive neurological disease.

We look healthy — and happy — right? We are!

Many people living with Parkinson’s are fully active in their lives, including work, families and outside activities. Still, we struggle to get through our days.

The term invisible disability is being used more commonly to refer to symptoms such as debilitating pain, fatigue, dizziness, cognitive dysfunctions, brain injuries, learning differences and mental health disorders, as well as hearing and vision impairments. Although they may be not obvious, they can limit daily activities.

When we are able to put a definition on invisible disabilities, it helps us understand the challenges people experience in their daily lives.

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Our trip to the coast was lovely. The weather was pleasant. And enjoying the company of several friends from my Parkinson’s community was sweet.

Just like Tillamook ice cream.