What To Do, What To Do

                                          TO DO:

logo_√__ Register for the World Parkinson Coalition’s (WPC) 2016 Congress in Portland, Oregon.

_√__ Get Sir Thomas a spiffy new vest for the occasion.

____ Blog about the Parky for the WPC.

Check. Check. Hmmmm. When I first heard about Parky, my really? radar triggparky4ered.

But, I’m a blogger for the WPC, I need to hone in on the really! qualities of this 10-inch, floppy plush toy, not the fact that it looks like the dog’s favorite chewie.

A stuffed raccoon (really?), Parky is the WPC’s mascot for their upcoming Congress, the Parkinson’s conference of conferences. The organizers invite everyone affected by Parkinson’s disease (PD) from everywhere around the world to a summit of shared stories, current findings, breaking news, latest treatments, song and dance and so much more.

More than 3,500 researchers, physicians, nurses, therapists, movement specialists, the newly diagnosed, people who have lived with the disease for many years, caregivers, family ­­­­and friends convened in Montreal in 2013. The 2016 gathering is in September in Portland, Oregon. Attendees can choose from scores of scientific presentations, hands-on workshops, sessions on alternative approaches, group discussions, social gatherings.

So, really? Why a raccoon to represent all things PD? Tulips, the international symbol of the hope for a cure, seem much more elegant.

Then again, at the end of a bad day with the challenges of living with PD, even the most graceful flower flops and gets dark rings around its eyes.

A children’s story about a raccoon names the rings on its tail Cheerfulness, Faith and Persistence. Well, it certainly takes all three when PD is around.

I also read that raccoons are playful, alert and intelligent. That works.

They’re also considered to be incredible survivors, able to adapt to changing environments. Really.

Oh, parky2and they’re nocturnal.

That summarizes most people I know living with PD: fun, smart, rolling with it and up most of the night.

_√_ Blog about the Parky for the WPC. Check.  On closer look, Parky is fuzzy and squishy-soft. Anyone can buy one. They all appear to be the same, but they’re not. Each Parky experiences something different, just like each person with Parkinson’s. Parky goes on hikes, to the symphony, to conferences.

My Parky is a yoga fan. Oh, and has a service dog.  Really!

parky1  See more here about Parky’s story.

Click here for more about the 2016 WPC Congress in Portland.

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AAA Benefits

eye3I routinely call on AAA to help ensure that my yoga class will be moving.

In fact, in a new class this week, AAA led us from the mat to the art box filled with construction paper and glue sticks.

There were no tow trucks or spark plugs involved. This AAA stands for Awareness, Ahimsa and Allowing. In other words, in each class, we move and we watch. We notice, we’re kind, and we let go, We see it in each other’s eyes.

For example, instead of perfecting triangle pose, we step back and witness. How does a wide-legged stance feel? Notice if bracing one foot’s outer edge against a wall makes a difference. Becoming familiar with our various body-part shapes and what shape they’re in defines yoga practice.

To see the sun is to praise
your own eyes.  Rumi

We don’t stop to identify, judge or bemoan a not-so-wide legged stance or crooked downward dog. We take note and take care. The Queen Mother of the yamas, or yogic ways of being, is all about compassion – including with ourselves.


Let crooked dogs lie. They can tell us something about asymmetry and the beauty of imperfection. eye5

AAA and Namaste
We end class by looking into each other’s eyes. When AAA is on the scene,  there is a spark. We really look – notice, witness, observe –  and see the light of compassion. Reach for some construction paper and a glue stick; the eyes have it.

If only we could pull out our brain and use only our eyes.  Picasso

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What Would You Say?

BW5What would you say if I compared the similarities of boxing with yoga? No, not Boga or Yoking, I mean all-out punching a heavyweight bag, whacking hand-held pads, striking a speed bag

Both take concentration, a kind of focus that takes us out of our busy minds of to-do-lists and what-ifs and connecting with where we are and how we move, whether it’s in a yoga studio or a boxing gym.

What would you say if evidence showed that boxing and yoga — exercise itself — helps relieve the symptoms of Parkinson’s disease? No classes nearby? No one to play tennis with, or run or box or practice yoga together?

What would you say if a new program helped keep exercise fun, social and feeling good?

Check it out:
Power Through Project




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Opting for Art

In combination with moving to the other coast, it made sense to purge, downsize, cleanse as well. Who needs all this space, all this stuff?


Marsh at Sunset painting

All that’s involved with simplifying is actually quite complicated. The closer the moving date gets, the more I’m relying on yoga to soften the edges of all there is to do. The saying, “We’re human beings, not human doings” doesn’t shorten the packing lists or clean the house for showings.

Then again, nothing I “do” will make the perfect couple step forward, people I’ll feel good about handing my house to, folks I can trust will continue to feed the birds. Nothing I “do” will make my meds work better so I can “do” more. In areas where I have no control, “doing” more isn’t going to grant me control.

Yoga practice brings me back to an awareness that I can control how I respond. I can roll with it, let it be. I can also shift my attention to where I do have control. Following my yoga practice, I can opt for art and create something.


Part of the mural I painted when I should’ve been packing.

Read more in my guest blog post Sing Out at  ECare Diary.


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Grapefruit Yoga

halfdogs2During class one morning, a woman asked if I could define yoga in one word. I considered the array of descriptions, musings and translations. After a deep breath, I answered, “Awareness.”

The word-nerd in me smiled at the perfect match I’d made: Awareness. It’s recognizing the moment for what it is. It’s focusing on how we move. It’s aligning mind and body.

I was so satisfied with my response that I shared it with other classes, interspersing Awareness tidbits between poses. “Bring attention to the moment,” and “Witness each bend and reach,” plus “Notice the ‘aha’ moments.” So much we can do with awareness!

Early one day, my phone chirped its appointment-reminder tone. I checked it, checked the time and rushed to find footwear and brush my teeth. I didn’t remember making an 8:00 a.m. doctor appointment for that day, but that’s what had blinked at me from my screen.

I finished with the toothbrush and reached lip balm. Mid-swipe across my top lip, I paused. The doctor’s office didn’t open until 8:30. It dawned on me that I had tapped the wrong time (and day) into my calendar. At the same time, I started to realize that something tasted odd. I held out the lip balm and read the print. Grapefruit flavor. Really? How could I have possibly purchased grapefruit for my lips? What was I thinking?

Apparently I hadn’t been thinking. Ditto when I entered and saved 8:00 a.m. on my schedule (no right-thinking person with PD schedules anything before 10). So much for doing well with my awareness – I seemed to have rolled it up with my yoga mat.

In my next class, I decided to describe yoga using another word: Practice. Awareness, like yoga, isn’t something we do, it’s something we practice.


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Let Music Move You


Move to the music during yoga

Tony Bennett belting out a ballad? Bonnie Raitt being bluesy? During a yoga class?

Yes, yes, and yes.

The music wafting through the keyhole during one of my classes isn’t what one expects to hear from a yoga studio. Read more



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I’m Back with a Twist


Standing twist with chair and wall props

Life happens. Still, I practice yoga.

With a teenager in the house (translated: grocery shopping and parenting have shifted to overdrive, much like his hormones), speaking engagements, and an upcoming move to the other coast, I need to practice yoga. Add that my Parkinson’s clocks in at a full decade, it’s no surprise that life has interrupted my writing and posting about yoga practice.

The shift in my practice reflects the changes in my symptoms, (which includes less “on” time). During the increasing “off” times, I turn to yoga. I’ve learned a great deal about how the body moves, adjusts, compensates, peters out. I’ve added modifications in classes, slowing not in approach but in this awareness. I talk it through to students, wondering at times if I’m talking too much.

The answer came last week after a wordy explanation of a twist. The synergy in lengthening and contracting seemed an important piece to include in the description. How better hone in on what’ s happening in the movement than to isolate which muscles are working, which are slacking off, which step in and compensate?

I paused. In the still of the room, I feared I’d lost the class to a nap.

“You know,” one woman said from her mat. “I’m seventy-five. No one has ever explained that.”

Yoga happens. I need to practice writing about it again.



Posted in Living with Parkinson's, meds on and off, parkinsons and yoga, yoga, yoga and parkinsons, Yoga and Stroke, yoga pose modifications | 2 Comments

Yoga and Parkinson’s

Thank you to Helaine of the Parkinson’s Unity Walk for the honor of posting a guest blog. The motto for the Parkinson’s Unity Walk is ‘Make Every Step Count.’  I might add ‘Make Every Breath Count’:

Click to view blog post on Unity Walk site:  Yoga and Parkinson’s

Posted in Living with Parkinson's, living with parkinsons, meds on and off, movement disorders, parkinsons and yoga, yoga, yoga and parkinsons, yoga pose modifications, yoga teacher training | 1 Comment


snowga2It’s snowing.

If I noted this in late December, my voice would lilt out ‘snowing,’ like birdsong. The words might even be prefaced by a “Look” or an “Ooh.” Evergreens dusted in white embody the postcard view of holiday time in New England.

Were it mid-January,  ‘snowing’ would come out as a question. How many inches? Will school be closed? Can we go sledding? A warm weather fan, I admit I shift my stance a bit and suit-up. Nothing quite matches playing in fresh, puffy snow.

Come March, the weight of  ‘snowing’ is as wet and heavy as a clump sliding off the roof. No more white stuff. I’m done with shoveling. Uncle.

From one standpoint, it’s simply cold precipitation. From another, when will spring arrive? Yoga suggests we not only welcome the differing viewpoints, we step back and notice them for what they are: viewpoints. Rather than get caught up in the emotional response to a situation — be it the weather or something more personal — yoga has us step back and witness what’s going on. Notice the slant of our perspective. Shift it and see how our attitude shifts. We can’t control the weather, but we do have control over how we respond to the snow.

Kevin Norton, a fellow yogi living with Parkinson’s, shared this poem with me. I share it here because his words float on the page so beautifully.

Where we are in the storm
by Kevin Norton

I wish I could bring the “good” me to this poem.

Not this stranger, this wanderer.

This man who makes no plans.

I wish I could travel this poem free, not feeling

as if I were falling through myself, spinning and whirling.

Where no hand can catch me, help me, hold me.

I do not remember coming to this place of no bridges

and no maps.

I cannot say that I do not wish to be some beast, in a great

herd of beasts, waiting for the call to come home.

To have one or two needs.

The warm comfort of oblivion.

And now I know that the difference between being

“lost” or “found” depends entirely

on where you are in the storm.


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Nightly News

nightDuring my childhood, the Chanel 7 news opened with the same line every night: “It’s eleven o’clock. Do you know where your children are?” When I couldn’t sleep, those words wafted into my room from downstairs where my father watched local and then national coverage.  I remember I’d squeeze my eyes tight and hug my Raggedy Ann close. I didn’t want to hear sad and tragic stories as I lay in the dark. Besides, it was so late, I’d thought. I should be asleep.

At the same time, I could settle in beneath the blankets. Not only did my parents know exactly where I was, the awareness that other people also weren’t asleep comforted me.

With Parkinson’s, my wakeful hours have shifted to that window between 4:00 and 6:00 am, when it is no longer night but still too early to be day. Not sleeping during those nondescript hours can sometimes make me want to squeeze my eyes tight to block out the loneliness. Everyone in the rest of the house – probably the rest of the planet – is nestled in a bed dreaming.

But when I let go of the should from childhood – the I should be asleep – I become much more aware and alert. During that other-people-are-sleeping time, I have been the witness to exquisite full moons, listened in on what seemed a conversation between a pair of barred owls, painted, practiced yoga. And, yes, sometimes cried.

Rather than descend into that sorrowful, solo, Eugene O’Neill-like state of A Long Night’s Journey into Day, I’ve taken solace as when I was growing up. It comforts me to know that many of us spend part of the night observing, creating, listening and simply being.

Considering that PD robs us of various abilities, it is that much more important to celebrate our ability to let go of the should. Ann has done so. She emailed me this poem she wrote while others slept:

WORDS  by Ann Crotty
          scattered within my heart
    within  waiting to be born 
    waiting to see what life
    is like accompanied by the Disease that is now
    your companion.  A companion known by thousands
    of others who walk along the same road

If you have musings, a story, poem or thought to share, please do. I’ll post them for other’s to enjoy in the waking hours between the nightly news and dawn.


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