Adventures of the Sleepy Yogi: Starting Summer with 21 Days of Yoga

If YOGA came in a pill, I'd definitely take it. Who wouldn't want the benefits of improved sleep, better mood and overall well-being? Side effects include: better flexibility, strength, weight-management and general physical fitness.

But yoga doesn't come in a pill.  It comes on a mat. And for me, it's hard work.

When I first read about Tranquil Space's 21 Day Yoga Challenge (to take 21 yoga classes in 21 days) - I thought, "That's crazy! Who would do that?"

Yoga and I have been in a love/hate relationship for over 10 years.  Yoga has always been an afterthought, while I've concentrated on other "more real" forms of exercise (like running, squash and tennis). I'd like to say I love yoga, but it's complicated.  Stretching nauseates me and I've never gotten into a routine long enough to make progress.

So I've decided to start summer by jumping out of my comfort zone and into the studio -  I will participate in Tranquil Space's 21 DAY YOGA CHALLENGE!

I may end up loving yoga. I may hate it. But I'm determined to complete the challenge. Oddly enough, this scares me almost as much as running a marathon. It's a large daily commitment to stretching and looking "inward."

The Challenge begins tomorrow - June 1st.  I will share my experiences here along the way!  Namaste.

Sleeping Beauty Wakes... And Falls in Love with Man with Narcolepsy!

There is nothing I love more than musicals, so I was thrilled to hear about a new one set in a SLEEP CLINIC! "Sleeping Beauty Wakes" at McCarter Theater Center in Princeton, NJ is the story of fairy-tale Sleeping Beauty (named Rose) waking up in a modern-day sleep disorder clinic. 

The clinic's other patients include a person with sleep apnea, restless leg syndrome, a sleep-walker and an individual with night terrors.  The clinic is run by an over-worked female sleep doctor, assisted by an "Orderly" who has a sleep disorder himself - narcolepsy with cataplexy!

Production Photo by T. Charles Erickson

I am so excited this musical features a main character with narcolepsy and cataplexy.  It seems that the character's cataplexy is featured prominently - with feelings of happiness leaving the Orderly collapsing to the ground - something I can relate to (see A Dreamy Valentine's Day Post). 

However, the portrayal may not be entirely accurate or sensitive. Here are a few reviewers' descriptions.

The New York Times writes:
"Instead of a polished prince, her savior is a hospital orderly, Mike (Bryce Ryness), with some challenging afflictions of his own, namely a neuropathological combo plate of narcolepsy and cataplexy that has him tumbling to the floor unconscious whenever he feels a surge of happiness."
(See: "A Fairy Tale, Updated Without Ambien" by Charles Isherwood, NY Times, May 23, 2011.)

Another reporter describes:

"Aiding the doctor is an orderly who suffers from a form of narcolepsy himself and, when experiencing strong emotions, will abruptly drop to the floor, paralyzed, often to comic effect." (See: "'Sleeping Beauty Wakes' shines with spectacular music" by C. W. Wood, Asbury Park Press, May 17, 2011.)

These descriptions confused me. Cataplexy is a temporary paralysis of voluntary muscles, often brought on by emotions. Yet, one remains conscious (not unconscious as the NY Times suggests). Also, I am unsure how someone abruptly dropping to the floor - paralyzed - has a comic effect on the audience?

A full collapse of cataplexy looks a lot like an epileptic seizure. For me, such an episode may last between 30 seconds to a minute - during which time I unable to speak, open my eyes, lift a finger or wiggle a toe. Being conscious inside a paralyzed body is a very chilling trapped experience.

I find a lot of humor in living with narcolepsy, but I'm not sure about using cataplexy as comic relief. Call me Scrooge, but I haven't heard of any hilarious portrayals of epileptic seizures or the paralysis associated with other illnesses such as strokes, amyotrophic lateral sclerosis (ALS), or multiple sclerosis.

I have not seen the musical yet so only know third-hand information from reviewers. However, as I write this, I am struggling to reconcile my personal experience of cataplexy with the more light-hearted fairy-tale version described by the reviewers of "Sleeping Beauty Wakes." For those in the Princeton, NJ area who are able to attend, let me know what you think!

Also, I would love to get the perspective of the actor, Bryce Ryness, playing the character with narcolepsy. I wonder how he prepared for the role and if his understanding of narcolepsy has shifted through this experience.

In conclusion, I believe this musical will raise awareness about narcolepsy (a neurological disorder of the sleep/wake cycle affecting 200,000-250,000 Americans) and cataplexy (a symptom of narcolepsy characterized by a sudden loss of muscle tone/temporary paralysis of voluntary muscles). The production's website features a "Context Section" with great basic info about sleep and dreaming, including a glossary of terms.

I do fear that a possible comical portrayal of cataplexy may perpetuate the stereotype of narcolepsy as a point of humor rather than a serious illness. I guess it's important to remember: a fairytale may be set in modern times, but that doesn't mean it's reality. At the end of the day, fairytales are still just fairytales. And in this one, the person with narcolepsy turns out to be Prince Charming and wins over Sleeping Beauty. Now that's something I can applaud!

For more about the production: visit "Sleeping Beauty Wakes" Official Website.
For more about narcolepsy: visit Stanford's Center for Narcolepsy Website.

Art Fighting Lou Gehrig's Disease: Piece by Piece

With one of my best friends, Melissa, visiting from San Francisco yesterday, we were on our way to lunch near the White House when something strange caught our attention. Across the street, black signs or objects stood spread out through an otherwise open plaza area.  Perhaps it was an art instillation? Being art lovers, we had to take a closer look.

Crossing the street, the objects quickly took the form of human bodies - a sea of mannequins dressed in black t-shirts. Maybe a protest to war?

It wasn't until standing face-to-face with a mannequin in the front row that I could make out the t-shirt's message. It read: "Lou Gehrig's Disease is stealing our loved ones piece by piece."

My friend, Melissa disappeared into a row of bodies, while I stood frozen in front of this first one. My heart dropped to the pit of my stomach. This wasn't art. This wasn't war. It was ALS.

ALS (Amyotrophic Lateral Sclerosis), also known as Lou Gehrig's Disease is a deadly disease affecting the motor neurons in a person's brain and spinal cord. Upon diagnosis, doctors give ALS patients only two to five years to live. The disease can strike anyone, regardless of age, gender or ethnicity.  Researchers have found that military veterans are two times more likely to be diagnosed with ALS, although the cause for the connection remains a mystery.  There is no cure for ALS.

Looking at the mass of mannequins before me, my mind raced ahead. I was familiar with ALS, as a member of my family passed away with this disease the year before I was born.

Finally stepping past the first mannequin, I saw the back of a shirt - inscribed with was a man's name along with birth and death dates. My throat tightened and my eyes glazed over with undeniable sadness.

I continued walking through waves of bodies, each standing in honor of a person who'd passed away of ALS.  I swallowed back tears and found myself intuitively checking the back of t-shirts for my family member's name. Perchance he was represented here.

Yet, after checking the backs of about ten shirts, I looked around at the seemingly endless rows of mannequins with overwhelming anxiety.  Like a child lost in a crowded mall, I felt helpless and expendable.  There were far too many bodies to search one-by-one.

I spotted Melissa talking to a volunteer in the distance and decided to join them. As I approached, Melissa removed her sunglasses and whipped under her eyes. She had been crying.

This exhibition had a strong impact on both of us, and for this, I am very thankful.  Melissa hadn't been familiar with the specifics of ALS. "They were all so young," she said. I nodded. The volunteer nodded too, pointing out the close by mannequin in honor of her mother.

This "Piece By Piece Tribute" Exhibition (a project of the ALS Association Florida Chapter) toured all over the state of Florida and now in multiple locations in Washington DC. Looking back on it - this was art and this was war - battles individuals and families fight everyday here in America.

Yesterday's display was in conjunction with the ALS Association's Congressional Advocacy Day, taking place today, Tuesday May 10th. They will be advocating for a greater commitment to ALS research.

To those participating in this effort - we wish you the best of luck! Your message is powerful and deserves to be heard.

To learn more, visit the website: www.stealingpieces.org.

REMRunner Returns to the National Institutes of Health

Last Friday, April 29th, was a beautiful sunny day in Washington DC. I was up by 6am to make the journey to Bethesda, Maryland, through NIH security, and across the Campus to Building 31 by 8:30am. Entering the conference room a few minutes early, I couldn't help but smile a big gawking smile when I noticed the many friendly familiar faces around the table.

For me, this story began almost a year ago, when I received word that the National Institutes of Health had issued a Request for Information (RFI) asking for input on the public perspective and need for biomedical sleep disorders research in the future. Of course, I had an opinion on the topic!

I learned that this input would be used to inform the National Centers on Sleep Disorders Research (NCSDR), the Sleep Disorders Research Advisory Board (SDRAB) and a Trans-NIH Sleep Research Coordinating Committee in creating a revised National Sleep Disorders Research Plan for the next five years.

Last June, I worked with Wake Up Narcolepsy (WUN) in preparing and submitting it's official response to the NIH's RFI.  In August, I attended the SDRAB's public meeting and had the honor of speaking before the Board on behalf of WUN, detailing what our organization feels are important priorities for the progress of sleep disorders research. (Read more about this experience here.)

During last August's meeting, the SDRAB Board took in an overwhelming amount of input from various stakeholders. Then, they got to work -  discussing the Research Plan and drafting some preliminary language.  Although the experts and leaders around the table were a very capable and accomplished group, the task before them seemed daunting.

I couldn't help but wonder how they would:
1. take all the public and trans-NIH input into account,
2.  identify the key opportunities in the vast field of sleep and circadian biology research, and
3. create a clear and comprehensive plan to guide research for the next five years?

Last Friday's SDRAB meeting marked an exciting day, as the Research Plan was now very close to completion. Daunting or not - they did it! I was impressed by the successful collaboration of those who made this plan a reality.

It was clear that months of hard work and time went into this project, not by one person but by many - including the SDRAB Board, their special subcommittees, the NCSDR staff and the various supportive NIH Institutes, Centers and Offices.

Once finalized and approved by the Director of NIH, the National Sleep Disorder Research Plan 2011 will be available to the public.  I look forward to sharing this soon!

But I must admit, it wasn't the plan itself that kept bringing a smile to my face throughout the day last Friday. It was the people behind the plan. Most of them I met last August, a few I met much earlier, and others I'd never met before. Yet, I was overwhelmed by how welcoming and respectful everyone was of each other.

Living with a sleep disorder like narcolepsy can be isolating at times. Last Friday was one of those unique experiences when the opposite was true. My journey has been a long one - from keeping my experience a secret in law school to standing in front of a microphone on behalf of myself and others.

Thank you to all those that made this an informative meeting and special day. From myself and the 40 million other Americans living with sleep disorders - thank you for working tirelessly on behalf of the tired!