Yoga, one of my teacher training instructors often said, is about radical self-acceptance. Whatever the loss or limitation: self-acceptance.
A challenge when that limitation shows and strangers’ eyes register Not Normal as they stare. I’m reminded daily – at the grocery store, doing errands – that one leg doesn’t quite work right, isn’t within the standard. I might rise above it, describe it in a personal ad as “Gimpy but cute,” but my point is . . . no, my points are:
If you happen to be in the Old Orchard Beach, Maine, area this Saturday, September 11, look for us on the triple during the New England PD Ride.
Come and cheer us on! There are 195 riders this year! That’s nearly double last year. Still, we’re easy to spot as the only whole family on one bike. For some training pics and stories, go to http://www.limyoga.com/parkinsons_ride.html
The rides begin at Loranger Middle School, 148 Saco Ave., Old Orchard Beach. Team Mama will be riding Fred on the 50-miler, which heads out at 9:30 am. The ride ends at The Pier, at 1 West Grand Ave, Old Orchard Beach. I expect we’ll roll in between 1:30 – 2:30.
Here’s hoping for good weather! But even if the weather isn’t postcard-perfect:
Rain or shine, Fred rolls
Fifty miles uphill and down
Rain or shine: a cure.
At my last checkup with my neurologist, he ran through the standard office visit litany of tests. I touched my nose, I puffed my cheeks, I walked to the end of the hall and turned and walked back.
When he turned his wrists and said, “Show me how you change a light bulb,” I smiled. My arms at my sides, I replied, “I ask my husband to do that.”
Though he didn’t laugh out loud (I did notice, however, perhaps a slight effort to remain his serious self), I still like him. I believe it’s important to have a good relationship with my doctors, where I can trust that they are not only listening, but truly hearing what I’m saying. No joke.
So during the appointment, when I mentioned that sleep (or lack thereof) ranked highest on my list of disruptive symptoms, he nodded. He asked a few questions. He took notes. After several more minutes of thought, he suggested I change from the three-a-day doses of Mirapex to the newly available once-daily, extended-release version. He gave me a coupon with the prescription to try it for thirty days.
I was pleasantly surprised and highly irritated.
The pleasant surprise: The extended release version leaves me with a more even sense of its effects, keeping rigidity at bay, reducing the side effects (particularly the stand-up-too-fast lightheaded sensation), and easing the long night’s journey into day. It gives me more ability to turn in bed, which allows for an occasional unfamiliar comfortable spell.
The irritation: My insurance company does not cover this medication. From what I can tell, their policy dictates that if the active ingredient(s) is the same in a new drug as in a less expensive (i.e., generic) brand, then they’ll cover only the latter.
Chemistry never ranked up there as a favorite subject of mine, but apparently the active ingredient in this once-daily pill is the same. The inclusion of the extended release aspect holds the key to making my day (and night) less challenging, the ingredient that keeps me more active.
My doctor did the right thing. He prescribed a treatment he felt would be of benefit to his patient. Now it’s time for the insurance company to change the old, burnt-out light bulb of their policy and step up their benefits.
All it took was one email in my inbox to make me smile. Oh, there were plenty of other messages there, from spam and scams to Facebook notices and must-see YouTube links. But this one I read and read again. Like discovering a lone poppy in bloom among the mounds of crab grass, I paused and savored what I saw.
Here it is, from guest blogger Debbie Flamini, who shares her insights into the essence of living your yoga while living with PD. Enjoy.
FINDING BALANCE
by Debbie Flamini
Less is more, is more or less
What my body needs, to not feel stress
No body stress leads to Cinderella Days
How do I get there? Let’s count the ways!
Consider less is more in everything you do
From yard work to exercise, even laundry too
Stop competing with the body you owned before
Your current one still works, right down to the core
Your yoga practice is beautiful, body and soul
And isn’t self-acceptance a very admirable goal?
So what has PD given me, that’s positive and good?
A yoga practice more meaningful, one that’s understood.
Here’s a travel log, complete with pics, from my recent bicycle trip to Switzerland.
http://www.limyoga.com/swiss_ride/
What’s not in the story is an expression of how grateful I am, not only to my captain and fellow stoker, but to my friends as well. You were there on the ride with me, particularly when the going got tough.
One place a friend showed up was after I blamed the wacky European cobblestone sidewalks for causing me to trip (though it was less than graceful, I did remain upright!). I thought of Al. He’d have enjoyed the humor, as I noticed when I glanced down, that the path I was walking was paved. Hmmm, seems the PD had more to do with my vertical challenge than what was underfoot. Stumbles strikes again.
A few nights, when PD’s insomnia kept me from sleep, my husband stayed awake to keep me company. We shared stories of childhood where Julie and Suzanne featured prominently in the musings,even long after my husband dozed off.
And when the meds waned, I’d rest a while with my sketchbook, considering how Shelley might draw a scene. I actually rather enjoyed sitting with her until the rigidity eased.
I’ll think back on the Swiss Family Fred adventure and smile at the music of the cowbells and the dance that my taste buds did at every bakery. I’ll recall with pride the power my legs, PD or not, contributed to the climbs, the 250 miles. I’ll also remember that when the challenges of travel showed up, as they will with or without a chronic disease, I got by with a little help from my friends.
I’m sitting on a roof deck overlooking the tailored grounds of a Twelfth Century pillared building, lit by a street lamp below me. Roses and geraniums adorn it’s entry, leading into one of numerous art museums in Winterthur, Switzerland. At 1:27 am, it is closed.
It is not because of jet lag that sleep eludes me. That has come and gone. After days of cycling through the Alps, I’ve adjusted to the time switch (which is now 2:00 am, according to the magical gong of Swiss church bells).
This body exhaustion-brain wired state of insomnia reflects the strongest of my PD symptoms. Travel tends to feed into it even more.
But I’m not willing to give up exploring the land, culture, food of different places. No, PD takes too much as it is, I’m handing over the old bell tower that was our inn the night we rode into Sedrum, nor the winding trails though sheep pastures walled by peaks that spike into the clouds. Every village we pedaled into featured buttery pastries; each town spire chimed the time.
On the trip over, there was a girl two rows back who launched into wails and kicking. The screaming did subside, sometimes for only moments, sometimes longer.
Travel with PD is a bit like boarding a plane with a toddler. They cry. They cry at home, too. So why not travel? Try to keep them comfortable and enjoy those quiet moments between screams that are filled instead with the sound of church bells.
Additions to my gratitude list:
- crickets at night
- gum
- charcoal pencils
- fiddlehead ferns
- the sparkle of last night’s raindrops in early morning sun
- the clusters of four-petaled white-flowered weeds sprouting up in my yard, and how they’re always surrounded by others, never just one out there alone.
If, a year ago, someone told me that I’d be spending my Wednesday mornings sketching nudes, I’d have pleaded to mow the lawn instead. Maybe take out the trash.
I’ve never been a student behind an easel, never even stood at an easel for that matter. The mention of a charcoal pencil sent my mind into a chatter fest of excuses not to draw or, heavens, paint. I remember I trembled. And worried. How could I possibly produce something that wouldn’t be clumsy and inept?
When my first symptoms of PD grew too strong to hide, I became that frightened student again, wishing for another diagnosis the way I’d preferred to have done chores. Again, I trembled and felt clumsy and inept.
Four years later, something magical has happened. I picked up a paintbrush and it felt good. I now grin the entire time at an art store replenishing yellow ochre and stocking up on sketchpads.
Now, I stand behind the easel in class and I’m absorbed in what my eyes see and translate to my fingers. It fascinates me when I step back and discover what has emerged on the page.
More than the product – either sketch or painting – I am entirely present in each moment of the process. Fear doesn’t exist. Inadequacy is gone. For those two hours each week, I am not a person with PD. I am not tall or short or blonde or nearsighted. I’m simply there, in that room, bearing witness to what I see.
It’s no surprise that I’m no longer concerned about what might appear on the paper or what I might look like to passersby when my symptoms show, when my meds are off or a tremor sneaks into my thumb.
Art class has taught me about life. Reminds me of yoga.
Just saw a new one to me (and I like it):
Parkinson’s is a word not a sentence.
April is Parkinson’s Disease Awareness Month.
Any of us with Parkinson’s are already well aware of the disease. That must mean that April is our stretch of thirty days to publicly whine and curse and . . .
Oh, wait. No. I’m thinking that this month might be better spent finding ways to:
- share treatment and support information with those who are newly diagnosed.
- focus on exercise, nutrition and well-being for ourselves and our families.
- educate others about the disease to help dissuade misconceptions and fears.
- learn about the latest research: knowledge is power.
- consider taking part in a clinical trial.
- maintain a sense of humor.
- keep practicing your yoga.
- stay connected to one another.
An occasional whine is okay, too.
Namaste.