Diagnosed with MS as a teenager, Michael Muir spreads his “fun is therapeutic” philosophy while making the horse ranch experience accessible to everyone.

To learn more about Michael’s organization visit the Access Adventure website.

If you’d like to know more about hippotherapy you can listen to this panel session at the 2014 Myotonic Dystrophy Foundation Conference.

book groupIn this podcast you’ll hear about my book group, now in its fifth year, and how it helps me with social support and brain health. There are also two guests.

You might want to scroll down this page and read the blog entry, For the Love of Reading.

One graphic novel mentioned in this episode is Can’t We Talk about Something More Pleasant? This is an amazing book and recommended reading for anyone taking care of their aging parents.

As I mention in the podcast, if you’d like to join our Goodreads book group please request to join – Glass Half Full.

If you’d like to learn more about starting your own book reading group here are some tips from the American Library Association and a group in Ireland which seems to offer book groups for people with cancer.

When I was diagnosed with myotonic dystrophy I don’t remember hesitating before making my way to a support group meeting. I didn’t have preconceptions; all I wanted to do was meet others with the condition. The meetings I went to were for anyone with a neuromuscular disease, not just myotonic dystrophy. We met at a hotel in a conference room with long tables covered with starched-white linens. The facilitator dominated the conversation and I’m not sure if I even had a chance to introduce myself.

Ironically this facilitator had been leading the group for 12 or so years and was burnt out. Shortly after my arrival she left the group and I was asked to facilitate. I had no previous training. I worked as a multimedia producer and all I really had to fall back on were a few years of teaching experience. But I did it. There was no handbook, no training, and no encouraging words before I was thrown into the pool of humanity dealing with at the very least a chronic health condition and other times excruciating life-or-death challenges.

Through trial and error I learned how to guide a group of people from various social strata and cultural backgrounds to become a community engaged in learning and sharing. My hardest struggle has been dealing with difficult people. You know who they are – the person who is wed to a negative point of view, or maybe it’s the person that seems to feel they know it all, or the person that just can’t stop talking and dominates the conversation.

But somehow I learned strategies to really facilitate a meeting so there are fewer and fewer roadblocks. I try to keep the flow of the meeting moving toward a positive goal. Certainly there are times when a person may have a special need, but pulling from my ever-growing bag of tools and resources I can take someone offline and re-focus toward the group. Generally we have a topic or guest speaker. My aim is to increase our education by learning from each other as well as guest presenters.

We’ve practiced yoga, tai chi, and even meditation together. Health care professionals have talked with us about occupational, physical, and respiratory therapy. Community organizations have explained how to access service dogs, free telephones, in-home health services, and paratransit vehicles. Other support group participants have shared how they work with a personal trainer, traveled domestically and internationally using a wheelchair, and created makeshift tools to help them do everyday tasks in and around their home. Together we took sailing and kayak adventures through adapted sports programs. Together we memorialized a long-time member by celebrating his life.

That’s what support groups are about. You meet people you might never have met – humbled in their life path by a force nearly greater than them – and together you learn how to navigate the new path together.

It’s hard to imagine where I’d be if I hadn’t been asked to take on this role as a support group facilitator. Perhaps it was initially intended to be a service to others, but I’ve ended up really helping myself.

Declaring oneself disabled doesn’t have to be all bad. Once you accept having limited abilities and turn your focus on what you can still do – which is often a lot – you might be able to relish having some time removed from the hustle and bustle of a stress-filled work life.

What does “disabled” mean, anyway? According to the US Social Security Administration, a person is considered disabled if they provide medical evidence that their physical and/or mental incapacity precludes them from working a full-time job on a regular basis.

I probably worked past the time I should have. In 2001 I quit a full-time job that was by far more demanding than 40 hours per week, and which involved lots of travel. I was frequently getting sick and although I earned a nice paycheck, the quality of my life suffered. For years after that I did contract jobs.

Some weeks I worked 20 hours. Other weeks, I had to crunch to meet a deadline and ended up working more than I had energy for. It took its toll on me in many ways.

Eventually, I realized to salvage the quality of my life I would have to learn to live on less and applied for disability benefits. It was emotionally draining to come to this awareness and follow through with the bureaucratic hurdles, but I do not regret it. It provides some peace of mind and allows me the opportunity to rest when I need to. When I replenish my reservoir of energy, I’m able to do things that help me remain attached and productive.

Don’t get me wrong, identifying as disabled takes some getting used to.

According to the US Census Bureau, nearly one in five Americans have a disability. That’s twenty percent. We’re in good company! That’s the largest minority group I belong to. But not all disabilities prevent someone from earning a living. I’m fortunate to have found ways to remain engaged, challenge myself creatively and intellectually, and feel as if I am still of service to my community. And when I need to, I take a break – an hour, or sometimes a full day – and disengage and refuel.

As a child I used to read a lot. In elementary school, they’d give awards to kids who read the most books each year, and I was often one of the winners. But by high school, it became much harder to read what I really enjoyed. That’s not to say that I didn’t appreciate Othello, The Jungle, or Babbit, but they weren’t my first choice.

College was filled with required readings, as well. And then came my entry into the working world. Often my leisure time was spent reading to get ahead in my career. I loved school so I often took classes and read the books associated with the syllabus. Learning was integral to who I was, who I continue to be. But I rarely allowed myself the luxury of reading something just for the fun of it.

In the last several years, as I’ve weaned myself away from my career and found some of my other leisure activities difficult to do – creating art, attending events with crowds, or socializing in restaurants – I’ve decided to read more. It makes me feel like a kid again, back when I had oodles of time to read and not worry as much about the time spent. And my reading interests tend to be more varied now than when I was younger.

However, I have discovered obstacles to reading. A lot of print books are too darn heavy and difficult to maneuver. Until I purchased my first Kindle, I avoided reading. Not only were my eyes fatigued, but just holding a book and turning the pages proved to be exhausting. But the Kindle – and I suspect other electronic readers – are a boon for people with weak arms and hands.

If I am in a weakened state I now have the option of listening to an audio book either on my iPod or my computer. I get excited about reading. I like to have a few books in different modes going at once. I’m especially fond of Goodreads.com, where I maintain a list of books I’ve read, am currently reading, and want to read. Plus, it’s a social network, so you can connect with friends and see what they’re reading, as well.

While reading tends to be more of a solitary experience, there can be a social angle as well. Three years ago I started a book club at my house and invited a variety of friends. We meet monthly and there’s a theme. You can read your choice of fiction or non-fiction, as long as you relate the book to the theme. We also have a potluck. It’s a tremendously satisfying social activity I can still partake in.

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.

GHF004This week’s guest is Melissa Marshall. We’ve known each other since elementary school. And guess what? She wrote “the cancer fight song!”

Listen to Melissa’s story and visit her foundation’s website.

Let me know on Facebook if you’d like to see a photo of us from elementary school.

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!

Laurel Roth PattonMy first conversation is with a dear friend, Laurel Roth Patton. Laurel talks with me about her diagnosis with bipolar condition and shares some of the most useful tools she’s gathered over the years. Please visit Laurel’s blog as well as an article she wrote which appears in a collection of writings.

The book Laurel and I discuss at the beginning of the podcast, Marbles: Mania, Depression, Michelangelo, and Me: A Graphic Memoir, is highly recommended.

I look forward to hearing your comments, questions, and ideas on Facebook.

Leslie at MDA Dance Marathon, 1979

MDA Dance Marathon, 1979

Here it is! My very first podcast! I want to lay the ground work, a foundation, that provides an understanding of where I’ve been and what I’m most interested in doing. This episode is just me; future episodes will include conversations with others — people dealing with a chronic health condition, caregivers, as well as health practitioners of modalities some of us have found helpful. But basically — it’s all about maintaining a perspective of the Glass Half Full!