Everybody who is in a body can DANCE and move – it’s a right we all have

Co-Founder of AXIS Dance Company

International Dance Day is April 29th. Here in Northern California we have Bay Area Dance Week with all types of free dance classes and performances. As Judith Smith, co-founder of the physically integrated dance company, AXIS, says, “Everybody who is in a body can dance and move — it’s a right we all have.” And that is the message of this podcast episode.

Years ago when I held my first dance marathon to raise money for the Muscular Dystrophy Association a banner hung with the slogan, “Dance for those who can’t”

Fundraising event for MDA held in a mall in North Miami Beach, Florida ~ 1978

and that sentiment couldn’t be further from the truth. The AXIS Dance Company has included artists with physical disabilities, commissioned award-winning choreographers and composers, toured 100+ cities, and appeared on Fox TV’s So You Think You Can Dance. Opportunities for adaptive dance exist from here — BORP’s World Dance for All — to North Carolina where Mindy Kim teaches chair dancing.

Leia Cash, a lifelong dancer and educator, teaches adaptive dance classes at the Ed Roberts Campus in Berkeley, adults with Parkinson’s disease, and seniors at a residential facility.

 


NorCal Resources Rock

I am so grateful for the move I made to Northern California in 1989…even if it included experiencing the Loma Prieta earthquake. This is really one of the most inclusive areas in our country, especially for people with disabilities. I know of a family that relocated to California from the Midwest so their severely disabled son could reap the benefits of the Regional Center’s services as well as other state resources.

And the Ed Roberts Campus (ERC) is definitely one of the amazing resources. Located in Berkeley, California — across from a major public transportation hub — ERC houses a number of federal, regional, state, and nonprofit organizations providing services and resources for people with physical and/or developmental disabilities.

Located at a fully accessible transit hub, the Ed Roberts Campus is a national and international model dedicated to disability rights and universal access.
The Ed Roberts Campus commemorates the life and work of Edward V. Roberts, an early leader in the independent living movement of persons with disabilities. Ed believed in the strength of collaborative efforts: He called it “working toward our preferred future.”

Yesterday I attended the Momentum Expo sponsored by the Center for Independent Living. Here’s a short video I shot while at the Expo. The event was free. I had the chance to find out more about new and existing organizations, promote the podcast, and see friends I know from various aspects of the Northern California disabled community.

One organization housed at ERC is BORP: Bay Area Outreach & Recreation Programs. BORP has an adaptive fitness studio at ERC where I take classes. In fact, Valerie Jew’s Integrative Healing class is there. Lately I’ve been attending a World Dance for All class held in the BORP fitness studio. The next podcast episode is all about Dancing so you’ll soon hear more about this class.


Every Breath You Take: Tips for Respiratory Health

It’s cold and flu season so I asked a respiratory therapist I know — Lee Guion — to offer some guidance. Here are Lee’s 7 Tips for Respiratory Health which are critical for those with a condition that causes weakened muscles:

  1. Attend a Multi-Disciplinary Clinic
  2. Get the flu and pneumonia vaccines
  3. Treat upper respiratory tract infections
  4. Hydrate
  5. Maximize your nutrition
  6. Exercise — especially disciplines coordinating the breath with movement
  7. Sleep Well

 

But this list is only a list. You should listen to the podcast.

There are many online videos to guide you in a practice combining breath work and movement but here’s one from the Niroga Institute for people with asthma.

Here are Homework Assignments for the rest of 2017:

  • Listen to previous podcast episodes about everything from medical cannabis to mindfulness meditation as well as fermentation.
  • Soon there will be cool videos here.
  • Check out this documentary film, Unrest. It’s a “story of love and loss” about people diagnosed with myalgic encephalomyelitis (commonly known as chronic fatigue syndrome).

 

 


Annual Neurological Exam

This week I had an appointment with the neurologist who diagnosed me twenty years ago. (I talk about my diagnosis in the first podcast episode.) It’s really been great having the continuity but three years ago I had to leave my insurance plan. My spouse got a new job and Kaiser wasn’t an option. My 3-year experience with another healthcare system is a long story which I need not go into now. Suffice it to say, I’m thrilled to be back with Kaiser and my neurologist, even though I’m her only DM1 client.

Before she came into the exam room I noticed several new informational posters tacked up to the walls. There were articles and classes promoting different types of exercise and movement for people with Parkinson’s disease, Multiple Sclerosis (MS), and stroke survivors. Kaiser even has special support groups for adults with MS. But this poster was the most impressive — all about stress and how it manifests both physically and emotionally. That’s really the basis of my self-care treatment; whatever I can do to mitigate stress in my life so that I feel better. And there are so many stressors in life. Thankfully I continue to add to my tool case of de-stressors.

In the past I’ve always had a long list of questions and issues to discuss with my neurologist during our annual appointment. There have been periods when I saw her more frequently than once each year. But now, I feel like I’ve got a good handle on things and only had a few questions. We talked about many things — travel, my experience with a different healthcare system — and she did her routine exam which seems kind of subjective since she’s manually checking my strength and range of motion. She’s done this every year and takes notes so perhaps it’s less subjective than it seems.

To my surprise, she was surprised. With just about each test she remarked that I’d improved. She even said a few times, “you’re stronger!” I don’t want to get too excited; I won’t be signing up for any marathons or Himalayan treks. What I will do is continue the program I have cultivated — gentle yoga, Pilates, qigong and a multitude of other healthy physical and emotional behaviors.

 I walked out of the doctor’s office feeling quite full of myself. I know I have a progressive muscle disease. I know it’s dramatically changed the course of my life. But I’m going to do whatever I can, for as long as I can, to live the fullest life possible.


Working with Wounded Warriors

 

Retired Navy Lieutenant Laura Root — diagnosed with myotonic dystrophy type 2 (DM2) — talks about her current work with wounded warriors as a Level 3 Shooting Coach and mentor.

Stay tuned for Laura’s blog and promotional website featuring the book she’s working on: www.AdaptedNation.com


Yoga teaches us to listen to our body – A conversation with JoAnn Lyons

Any body can do yoga. With teachers like JoAnn Lyons of the Piedmont Yoga Community making it possible, that is.

In this conversation JoAnn mentions different styles of yoga — Iyengar, Integral, Vedanta, and Sivananda. Check out these links if you want to learn more but this podcast is geared toward anyone with either an advanced or limited understanding of yoga.

For those wanting to know more about yoga for people with disabilities, JoAnn recommends the books Recovery Yoga and Yoga and Multiple Sclerosis.

Here are two books with great illustrations of people doing yoga using chairs: All I need is this Chair Yoga and A Chair for Yoga: A complete guide to Iyengar yoga practice with a chair.

Additional resources include the International Association for Yoga Therapists (this is where I search for yoga instructors in locations outside of the SF Bay Area) and the Accessible Yoga Conference.

Matthew Sanford is an inspirational yoga instructor who shares his personal story of surviving a car accident as a teenager in his book, Waking: A Memoir of Trauma and Transcendence.


003: Accessible boating on the James River

Ted Abbott on the James RiverTed Abbott is making his dreams come true in Virginia. He started a nonprofit organization, Sailing 4 All, to provide recreational opportunities for people with disabilities, youth at risk, and other individuals with special needs.

If you’re in the San Francisco area, check out the Bay Area Association of Disabled Sailors; in Maryland there’s Chesapeake Region Accessible Boating; and in South Florida there’s the Freedom Waters Foundation.

On a national level there’s Disabled Sports USA.

While related to sailing, a friend of mine diagnosed with Parkinson’s disease found this book, Go Anyway: Sailing Around the World with Parkinson’s, very inspirational.

Please share this podcast with friends and family. Thanks!


Yoga

I can’t remember when I started doing yoga. I may have tried it for the first time during my college years in New York. Or, an introductory class I took in the late 80s in Fort Lauderdale. That is my earliest memory of doing yoga postures, or asanas, in a classroom environment.

I did start doing the seated lotus position when I was very young. Maybe all children can do this but I continued doing it and now it’s easy to maneuver into. It’s comforting to fold my legs into a pretzel.

But, I digress.

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