You are not. Rogers Hartmann combines resources, support, advocacy and humor for anyone touched by Dystonia. This recent post on her blog says it all: http://lifewithdystonia.blogspot.com/

If there’s a Cinderella side to these movement disorders, the slipper fits Rogers.

A crossword junkie, I savor words with multiple meanings. The bitter side, however, to more than one definition is that it can lead to misunderstanding, particularly in a yoga class.

Posture (n) – the carriage of the body generally focused on the spine
The term posture is a good example. A subtle shift in connotation occurs depending on context. The standard definition refers to an upright body position.  In yoga, it can be another word for pose, which can be upright, backwards, inverted, twisted, prone. In Parkinson’s, take the standard definition and subtract dopamine to equal the stooped, unsteady forward-lean when standing or walking.

Posture (v) – to place oneself in a forced position
Parkinson’s is a degenerative neurological condition that affects, among other things, balance and mobility. Medications and exercise can help. However, their effectiveness waxes and wanes.  A person with Parkinson’s may be at the grocery store, a local deli, the hairdresser or yoga class when the shuffling creeps in. Each step becomes calculated, each move a balancing act.

Posture (n) – stance, attitude
Those of us living with Parkinson’s have seen the stance. We’ve likely experienced it. Its favorite time to creep up my spine and hinge me forward occurs while I’m brushing my teeth. Sometimes I glance up into the mirror and laugh at how Parkinson’s I look.

Multiple factors contribute to this symptom. One is that rigidity tightens the front body muscles, actually shortening them, pulling us down and forward. Another is that the natural, automatic response of taking a step back to regain balance is gone. It evaporates with the dopamine.  Our forward tilt is a clever way that our bodies compensate for that loss, shifting the center of balance forward to keep from leaning back, knowing we can’t catch ourselves.

While this compensation may keep us from tumbling backwards, it makes walking a challenge. Being told to Stand Up Straight isn’t helpful because to do so means putting ourselves in that off-balance position. In addition, the power of those shortened muscles, sometimes in continuous involuntary contraction, is too strong to overcome.

Bringing an awareness to when this is happening in the body can help. Noticing when the lean begins can alert us to sit and take a rest for safety, practice what I call “watered flower” to counter the rigidity,  walk with a cane or stand with supports for safety (near a the wall, for example).

Posture (v) – to act in a conscious outward behavior
What can yoga teachers do to help bring the body alignment back to center? How do we best address the factors contributing to the forward lean? Start with shoulders? Neck?  What if one student’s rigid areas differ from another’s?

Begin with the breath.  Bring awareness to the expansion that happens with each inhale. Step that breath through the body, identify those parts that are stuck. For example, breathe into the hips. Breathe into the ribs.  Allow the ribs to stack over the hips. Breathe into the collar bones. Let them broaden with each inhale. The exhales give us room settle and space to experience the inhale.

Use props. Practice beside a wall. Fold blankets for back support in a seated mountain during breath work.

As the breath moves the body, watch what loosens, lets go. There are yoga postures that target the Parkinson’s posture. Here are a few that have worked well for me.

• Cats and dogs, allowing the breath to lead the wave of movement up the spine.
• Trunk rotation standing, seated or supine.
• Watered flower: from the Parkinson’s pose, imagine a dry, bowed, thirsty plant. Water it. Imagine the water in your roots, your feet, and sip it up into your stem until your heart feels the warmth of the sun. Sip a bit more until your face turns toward the light.

The shuffle and stumble that is common in Parkinson’s is not an expression of how we’d like to carry ourselves, of our attitude toward life. We’re not what our body language is often misconstrued as: drunken, lazy, contagious.

Body Language
Like a crossword puzzle, body language relies on a interpreting context and cues to understand what fits. In a word nerds other words, check your posture to know where you stand.

It’s no coincidence to me that each of Webster’s definitions of teach leads with a verb that can also be found in the list of definitions for give:

guide, cause, impart, provide, offer, administer, bestow

The recent Yoga Teacher Training for Students with Parkinson’s reminded me once again of what a gift it is to work with yoga teachers. In the session last week, dedication, passion and a thirst for understanding filled the room, permeating the air.

I recall that same sensation in one of the first workshops I attended as a new teacher. For an entire week, the program imparted so much that each inhale was as pleasant as breathing in the kitchen aromas of homemade soup and freshly baked bread.  The close of the seven days struck hard. Like stepping into a vast hallway, the shock hit not in the array of smells there, but in the lack of them. I felt I’d entered a vacuum. How could I possibly guide students on my own – actually teach yoga – without the backdrop of the program leaders, the other teachers? 

The Massachusetts Chapter of the American Parkinson Disease Association (APDA), who sponsors the Yoga Teacher Training for Students with Parkinson’s provides support, immediately following or long after the seminar. Not only do they have a database that lists what regions in the state need teachers and class offerings, they know the individuals on that list.

If you’re looking to start a yoga program, wondering how to expand your classes, or have an idea but aren’t sure how to begin, call on the APDA MA Chapter. Together, you can come up with a recipe to guide, cause, impart, provide, offer, administer, bestow.

Namaste.

The smiles and hellos that came from others also out on Easter kept me focused and aware during a woods walk.

Sometimes yoga modifications happen off the mat.

I wouldn’t be typing this without it. I certainly wouldn’t be typing at this hour (3:12 am) without it.

Ultra aware of the nanosecond we lose power in a storm, I rarely appreciate the immediacy of light when I flip the switch, the ease of warm water streaming from the shower, the simplicity of a cup of hot tea. Tap the keyboard: internet. Turn a knob: music. Press a button: the garage door opens. Even my toothbrush plugs in.

Do I need all these conveniences? Not likely. But living with Parkinson’s in this age of power makes me thankful that I’m not of an earlier time. PD carries with it enough challenges, imagine adding late night wanderings by candlelight or stoking the stove to boil water. My tremor triggers just thinking about constipation and outhouses. (Another listing under Gratitude: Indoor plumbing.)

The yogi in me whispers, be contented for what is. I am, yes. Yet, the patient in me, however happy to see the light, says in reply, I’d rather be sleeping. That will come with daytime. Meanwhile, I’ll settle in with chamomile tea and Mozart on my headphones.

If someone told me my Parkinson’s was all in my head, I just might agree. Because not only does the dopamine-producing mix-up/miscommunication/mishap reside there, so too does my 24/7 symptom awareness factor.

For the first, I take meds. (I also exercise and stay positive. For the times when ‘positive’ can’t be found in my vocabulary, there are brownies. With ice cream.)

For the second, life offers attractions that cut through the haze of perpetual mental check-ins, such as: When did I take my last dose of meds? Will I need to run any errands (or otherwise be required to function in public) during off times? If so, might I encounter someone who views me as walking like a drunk? More importantly, will there be a bathroom nearby? Does that bagel/sandwich/dinner entree have protein in it? Did I replenish my pill case if I need any meds while I’m out?

Yoga can pull me off the gerbil wheel of thoughts. But nothing, not even a brownie sundae, is as effective as art in clearing my head. Whether I’m dabbling in paint, sculpting words into a haiku or baking a new creation, my mind is right there with me focused on color or form.

Recently, when winter winds blew outside, I stepped into the warmth of a downtown museum. My Sunday afternoon escape from the cold doubled as a respite from the old dusty chatter in my head. PD thoughts cleared away as I wandered among rooms lined with works by Rembrandt, Sargent, Matisse. Drawn in to the shadows and highlights, my mind filled instead with the moods and settings inside each frame.

As warmer breezes fill the air, I’m reminded of my favorite aspect of spring: opening the windows and smelling, feeling, nearly tasting the air that’s been locked out all winter. Art is like spring. It’s freshness clears the dust that can settle from day-to-day life with PD.

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Want to do some spring cleaning? Mark your calendar: Parkinson’s Arts & Movement Day: May 5, 2012. Parkinson’s Arts & Movement Weekend is scheduled for June 2013. (Both programs are sponsored by the APDA MA Chapter.)

American Parkinson Disease Association
Davis Phinney Foundation
Michael J. Fox Foundation
Parkinson Disease Foundation

When to Practice the Pose
Supta baddha konasana, or reclined bound angle pose, ranks high on their list for savasana. Mine, too. It’s also my top pick for a mid-day break. For five to ten minutes, I lie in repose with props tucked under my head, torso, legs and arms

Benefits of the Pose
What’s not to like? Gravity does the work loosening what the Parkinson’s squeezes tight. A restful, passive expansion across the chest opens my heart while flexing the vertebrae behind it. The curve in my lumbar spine relaxes on the bolster and the rubber-band muscles of my inner thighs lengthen without effort. These shifts help my posture, gait and sleep. Yum.

There’s also a surprise bonus: Facial muscles – ones I didn’t realize were taut – ease and soften. My whole jaw broadens making my teeth feel like even they settle and allow for more space.

Particularly in the depths of winter, these are welcome sensations. I can feel the sunshine, hear the birds, imagine the warm breezes as my mind and body restore. Yum, yum.

Not only does reclined bound angle pose “taste” good, it is good. A study by the Parkinson’s Disease Society of India, conducted at the Iyengar Institute, concluded that yoga practice provided positive, measurable benefits to the well-being of those living with Parkinson’s. Among the poses practiced regularly? Supta baddha konasana.

Props to Use
This variation on the reclined bound angle pose is heavily supported. It adds eye pillows and a few extra blocks, subtracts the strap. The props I use are:

•  mat
• bolster
• cushion or folded blanket
• 6 blocks
• eye pillows
• blanket (optional, if one is chilled)

The eye pillows are for the palms of the hand to help release any dystonia. The extra blocks support the arms to relieve any strain in the shoulders (shoulder pain is a common secondary symptom of Parkinson’s and can be difficult areas to relax if affected by a stroke).

I disregard the strap used in traditional propping. While it may keep the soles of the feet together and the heels from sliding away from the hips, students with movement disorders experience restricted movement on a daily basis. It can be anything but soothing to forcefully inhibit movement even more.

Setting up the Props
Set the bolster lengthwise on the mat. Place a cushion or folded blanket at the head of the bolster. Set two blocks in their flattest position short-end-to-short-end on either side of the mat. The other two are at the foot of the mat awaiting positioning. Set an eye pillow on each set of blocks along the sides of the mat & bolster.

Easing into the Pose
Sit on the mat with the back of your hips abutting the short end of the bolster. Next, with the soles of the feet touching, bring the two blocks from the foot of the mat under each thigh just above the bent knee. The block can be positioned to whatever height needed to fully support the legs. There should be no strain, no active holding in the inner thigh muscles.

From here, lie back slowly, easing the spine onto the bolster. It is important that the bolster doesn’t move  or slip up the mat as the body eases on to it. Have another person hold the bolster in place during this step. Or, try arranging the top end of the bolster against the wall before this step. I’m 5′ 7″ and can ease back without my head brushing the wall.

Allow your head to be supported by the cushion or blanket so that the neck is neutral, not overextending but also not with the chin tucked.

Take hold of an eye pillow in each hand. Rest the forearms and wrists on the sets of two blocks. Allow the palms to be face up and soften the grip on the eye pillows. Let them merely rest on the palms.

Easing Out of the Pose
To come out of this pose, release the eye pillows. Remove the blocks from under the thighs. Move one set of arm blocks aside and roll off the bolster to that side. Curl into a fetal position for several breaths before moving into an upright, seated position. And before rising, allow a few cycles of breath to notice the openings, to drink them in.

Wacky schedules throw off my meds cycle. My slow-mo body becomes an obstacle that others slalom around. A tremor appears (not typically among my list of symptoms). Worth it, worth it, worth it because the adventure’s good evens out the not-so-good.

Except for one hassle that throws off this balancing act: the airline fee for checking rather than carrying on my bag.

For most of the travel stressors, yoga brings some relief. I can ease back down from the security line’s rush of disrobing and shoe removal (which we know is a lengthy process with PD) and although I’m crammed into a seat that restricts my movement, I manage to stretch a bit. While waiting at the gate, I find a corner where I can move through a series of half dogs and half moons. On board, I try to work in some seated lateral bends, cat and dog poses, even a twist. It eases the rigidity and refocuses my mind on who or what I’m off to see.

For the leftover muscle kinks, I wait until I’m in the hotel room. Hot bath? Sometimes. Bouncing on the bed? You bet. The real tension tamer, though, is a head stand.

Nothing quite refreshes the same way as viewing the world upside-down.

And though I am capable of literally standing on my head after checking in to my room, I wish I didn’t have to figuratively do so while checking in for my flight. Despite my requests, despite my travel cane, despite the carry-on size of my bag, I pay to check it.

If my meds are “on” while I’m getting my boarding pass, I cannot trust that they’ll stay that way when its time to hoist my carry-on into the overhead. So I don’t run the risk of injury — to me or others seated below the bin — and check my bag. And get charged for it. That doesn’t add up to me. Or, if my math is right, it adds up to discrimination. Even when I look at it upside down.

Yes, beauty. Although it seems improbable, Parkinson’s has not simply taken but has added beauty to my days.

One of the forms of that beauty manifests in the music of Greg Rice.

Greg is a composer. He is also a father, businessman, active community volunteer and a person living with Parkinson’s.

A law degree plus years of working in the corporate world added to a PD diagnosis wouldn’t typically total up to Musician. But Greg’s symphonies represent the sum of these aspects of him. The music – varied and original – surprises and delights. Performed by various city symphony orchestras, the sound is sometimes grand and sweeping, sometimes a simple dance. Each a pleasure. I play his music in my yoga classes. I play it in my car. I play it to fill the air with rhythm, magic.

Greg admits that the magic, this artistry, was given to him with the Parkinson’s. Not right away. And though the discovery took some time, he did not hesitate to give back. Through the Greg Rice Foundation, he donates proceeds from the sale of his CDs as well as from any speaking engagements.

Enjoy the holidays. Enjoy the music.

To learn more, please visit Greg’s web site: www.gregricefoundation.org