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:
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.
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.
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.
I need to cut nuts out of my diet. Cheese, too.
Sadly, red wine as well. Ditto on the avocados, soy products, vinegar, dried fruit.
If I included any of the above in meals or snacks, a monstrous migraine ensued.
This recent phenomenon of light-sensitive, eyeball-searing pain was a tag-along side effect of
one of my meds. I hadn’t expected such a severe reaction to what was considered beneficial
to take.
Emerging from a particularly nasty skull-exploding episode, I shuffled into the kitchen,
slumped at the counter, hungry, drained, and wondering what I could possibly eat that wouldn’t,
quite literally, go to my head.
Crackers? No, there are nuts and soy it the ingredients list. PB&J? No,
the protein in the peanut butter would battle with my meds, not to mention nut’s
place on the anti-migraine list.
I boiled a pot of white rice and daringly added a touch of olive oil and a dash of salt.
That was lunch. I cut up some broccoli to mix with it for dinner. Woo hoo.
OMG, I thought. I’m already losing weight, and it’s not as though the foods
I need to avoid are loaded with transfats and high fructose corn syrup. Nuts? Avocados?
Those are the good fats. I won’t even begin to list the benefits of a glass of Merlot.
Hoping to come across a magical non-cheese-nut-soy recipe, I leafed through a cooking magazine.
An ad caught my eye. The banner across the top read:
“To create something truly unique, one must look beyond the expected.”
At first, I thought, how true. Isn’t when we’re caught off guard that the most notable
events occur? Or when we’re searching for something, we often find it in an unlikely spot,
whether that something is a pair of glasses or the answer to why we uttered words
we’d like to take back.
Glancing again at the glossy page, I noticed that it wasn’t promoting the art of deeper
relationships or clever ways to enhance my skill with a paintbrush. The ad was for raisins.
Raisins?
Surely if the act of adding some dried grapes to a sauce deemed me artistic, I could find a
creative solution to this migraine mess that had left me so disappointed.
I studied the ad more closely. The yogi in me decided that no matter how hard I looked for benefits
of the medication, the reality was that the negatives were outweighing the positives. I started to wean off the meds. Life is too short not to drink red wine with my avocado salad.
Every one of us deserves the best treatment available. I’ve learned, however, not to expect that each treatment will work for me. I now approach my diet and my day with this translation of the quotation:
“To truly create a unique experience, witness without expectation.”
When the photo arrived in my inbox, I clicked on it and thought: The image is like a riddle.
What is colorful and varied yet single-minded; laughing yet quite serious; shaking and quivering yet not afraid?
The answer smiled back at me in the picture of my fellow graduates of the Parkinson’s Disease Foundation’s (PDF) Clinical Research Learning Institute.
The men and women who came to immerse themselves in all that is PD came from all walks – literally and figuratively – each with our unique gait and each with our story. A dancer, a doctor, a physicist, a pharmacist, an architect, an artist . . . mothers, fathers, grandparents. We came from as far west as California and Washington, and east from Rhode Island and North Carolina. There were southerners from Alabama and Texas and northerners from Massachusetts and New York. Despite our varied backgrounds, we had one focus: learning about better treatments and the path toward a cure for PD.
A sense of humor prevailed across the two-and-one-half days. Among the researchers and doctors presenting, even the statistician cracked a joke or two. But none of us could be more serious when asking questions about better treatments and the path toward a cure for PD.
And in that room full of brilliant-minded professionals there existed signs of nearly every symptom of PD. One could get discouraged, or opt to reach into the sense of humor bag and say, There was a whole lot of shaking going on, or that Shaking up is hard to do. I, with these fearless individuals, will reach even deeper, though, into pockets of courage and dedication. The latest and greatest about better treatments and the path toward a cure for PD will involve us.
How honored I am to have been a part of the Institute and to join this team who, together, may very well solve the riddle that is Parkinson’s.
(Check out the PDF web site article for more info on the Institute:)
Thank you, all of you who braved the weather and the stresses of travel, for the opportunity to share some yoga together at the ST/Dystonia conference in Atlanta. I so enjoyed meeting you and being part of your weekend’s events.
Speaking of events, the one going on simultaneously in the meeting rooms before ours displayed racks of gowns, untold wigs, scores of sparkly shoes, mounds of makeup and more. The true beauty, however, emanated from the faces I saw when I stood upon the mini stage with my yoga mat and looked out at all of you.
On November 7, I’ll be part of the team who will lead a workshop for yoga instructors on working with Parkinson’s patients. I am so looking forward to sharing.
I know that as I will gaze around the room at the collected teaching experience, I will be thrilled, humbled, honored.
I don’t propose to have the answers. If I did, the medical staff and I wouldn’t be there – there’d be no Parkinson’s.
What I do hope to share is my experience with other instructors so they can help people living with PD truly benefit from yoga practice.
It is not a matter of simply introducing a chair to the mat, or adjusting a student more often. Certain positions – and adjustments – can trigger tremors and spasms, overheating can happen rapidly. It is a matter of understanding the disease and its effects.
Yoga is no cure. It is, however, a healing path. I know that yoga teachers know that. My hope is that I can place a few more tools in their supply kit.
For more information, or to register, click here:
It is said that the asana limb of yoga began when ancient yogis emerged from their meditation caves creaky and stiff from long stints of sitting still. They discovered that some movement enabled them to recenter and return to their blissful states.
These newly flexible yogis titled a handful of poses after legendary gods. They derived others from their observations of the natural world, naming some after legendary dogs.
These faithful canines likely woke from their cave naps just as my dog today rises from her cushy bed, reaching first into upward-facing dog directly into downward-facing dog.
Up dog opens the front body, a real tail-wagger to anyone with PD who’s feeling that forward curl in their posture. Down dog, a favorite among practitioners today, stretches and strengthens the back and shoulders, lengthens the hamstrings and calves. It’s an all-around good dog, as is its half counterpart.
As I emerge from stints of sleep, creaky and stiff from lying in one position for too long, I’ve discovered that the yogis left out a pose. Maybe the caves were too dark at night to observe another in the line of canine-inspired asanas: turning dog.
Mystified at my inability to roll over – a real trick with PD, one might say – I decided to watch how the dog changed sleeping positions.
She gets up. Yes, the dog gets out of her bed, stands, reaches her neck and each leg slightly before she turns and folds back down.
It works. Sure, getting out of bed is a struggle. But less so than turning in bed. After a slight stretch of arms and legs, I turn, fold back down and return to my blissful state.
Watching my inbox for a message from the Parkinson’s Disease Foundation (PDF) felt reminiscent of days, way back when, awaiting college acceptance letters. For both, I’d wondered if I’d be invited to learn from those who dedicate their lives to study, and take that knowledge into the work I do with others. Somehow, this time it seemed even more crucial a role.
Approval of my application arrived yesterday. I now have the honor of participating in the 2009 PDF Clinical Research Learning Institute.
I’m in. So, why did I stare at the message and cry?
For me, staying balanced – physically and emotionally - with PD can sometimes mean disregarding that I have it. It’s not a denial, not an escape from reality. Rather, it is simply part of the balancing act.
Timing when my meds are on, for example, has become second nature. I know when I can go out and weed the garden without getting stuck behind a shrub from freezing or falling; the extra time I gain from my meds after a bike ride are like clock work; the insomnia has made me an expert at crossword puzzles. All the workarounds are my way of being gentle with myself, practicing ahimsa.
But, satya, or truth, appeared with that email and put me face to face with a disease that I cannot always skirt. No, for the length of the Institute, I will be immersed in all that is Parkinson’s. That reality let loose a few tears. Of course, there wouldn’t be balance without some crying.
On the flip side, what brought a smile back was knowing that I’ll be playing a part in what will hopefully be the new reality: that there will be no need for working around the symptoms. There’ll be no symptoms. There’ll be no more Parkinson’s.