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
“The first rule of Fight Club is you do not talk about Fight Club.”
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.
Here’s the whole group of fighters at the end. It was a pretty sweaty group.
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.
We’re brave. We’re mighty.
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.
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.
Ooooh, I forget how cold and unforgiving boxing gloves can be. Someone — maybe Kimberly, our coach — or one of her many volunteers — will help us tighten the straps around each wrist.
But first, there’s some ferocious hugging and greeting to be done. You’d assume that the Rose City Knock-Out Ladies — all of us with our own unique diagnosis of Parkinson’s Disease — hadn’t seen each other for more than a day or two.
We laugh and sometimes cry and then we admire each other’s earrings and see if someone has new workout gear. There’s news to share, not always good. Then it’s time to head to the punching bags with the others.
Away from the boxing gym, I suffer small losses all day long. My foot drags. I forget a word, my fingers clench and keep me from typing any faster than a key at a time. I remind myself to stand up, don’t give in to stooping, swing my right arm when I walk. Every day, I fight to do the easiest things: shower, get dressed — don’t get me started on sports bras! — hurry for the bus, and try to balance gracefully if I don’t get a seat. Every day I work at not falling into the laps of strangers.
But in the boxing gym, I’m strong. With gloves on, I hit the bags with everything I have. Call it fighting, call it stress relief, call it major annoyance at this cold and unforgiving disease.
Afterwards, I sometimes need help getting my gloves off. They’re warm and damp inside. I’m dripping with sweat, my face a lovely red. And my heart pounds. I am strong and alive.
Just Imagine 