Living with CMT, Day 34: Podcast! And Show Notes

Exciting news as we release the first podcast for the Disability Community! The podcast will soon be available on iTunes as well as posted here. This first podcast was a great learning experience.  I talk about my vision for a disability community, then explain about CMT and a bit about my personal journey.  I finish with a review of the Nook ereader.  Fun stuff.  I'm excited for future episodes.  Enjoy!
Show Notes

The Disability Community Podcast is here to support and inspire extraordinary people and families.

I want to build a community where disability is not a tragic, sad fate.  I want a community where we celebrate differences in physical and mental abilities.  I want a community where I do not hold a vision of “normal” as a model of success, where I do not wear myself out trying hide my challenges.

I want a community where people are not compelled to ‘overcome’ their disability.  Where respect, healthy limits, and helping the world meet us halfway are wonderful ideas.  I want disability to be a dance rather than an obstacle.  I want disability to be a chance to grow, to change, to understand ourselves and each other better.  I want disability to enrich our lives and never-ever diminish them.

Long ago, I read about an author explaining his stories.  I write about ordinary people coping with extraordinary circumstances.

Well, I am the opposite.  I am extraordinary in an ordinary life.  I am extraordinary because all the ordinary things are in my world- driving, bills, family.  And yet I have an extra something on my plate, an extra helping that could break me . . . or inspire me.

I don’t get to choose my chronic condition.  I choose how I live with it.

There are many paths through life, and disability changes the landscape, but it doesn’t have to be doom and gloom.  We all have our own journey.  Let’s make the most of the path we’re on.

That is my mission. Let the adventure begin.

So who am I?  What is my journey in the disability community?  I have a genetic condition called CMT.

CMT is Charcot Marie Tooth disease (or disorder).  Doctors Charcot, Marie, and Tooth all identified the disorder within a short time frame in 1886.  So they all gave their name to the condition.  CMT has nothing to do with teeth.  CMT is a genetic disorder that affects nerves, specifically the insulation around nerves (Myelin).  A duplication, or mutation of a specific gene disrupts the healthy transmission of information.  The insulation starts breaking down.  The nerves essentially die.  Then the muscles depending on those nerves weaken.  Tendons shrink.  Joints loosen.  The body does the best it can to compensate.

These days, the complicated CMT name is sometimes changed to Hereditary Sensory Motor Neuropathy.  CMT varies widely from patient to patient.  CMT can manifest at a very young age and lead to bracing and surgeries for children.  CMT can also be very subtle and remain undiagnosed for decades. The CMT spectrum has many official variations which are caused by different mutations: CMT 1A, CMT 2B, CMTX, and many more. The National Institute of Neurological Disorders has great detail about the variations. CMT is a genetic, lifelong condition.  CMT is degenerative.  CMT has no cure.  Despite the fact that few people have heard of CMT, it is the most common inherited neurological disorder.

There is research, of course.  We hope for a cure within a decade, or at least as reprieve from degeneration if scientists could mute the duplicate gene.  We hope.  CMT patients and researchers are helped by the Muscular Dystrophy Association.  However, CMT causes nerve damage which leads to muscle loss, which is not the usual path of Muscular Dystrophy.

I have a rich, wonderful life with CMT.  I have struggles, of course, frustrations and grief and challenges.  But I also have a wonderful family, amazing job, and days filled with joy and fun. I was diagnosed at age thirteen.  My daughter was born when I was thirty, and my son when I was thirty-six.  For most of my life, my disability was an undercurrent only requiring minor adaptations.  Until I was thirty two, when I developed arthritis with chronic pain in my feet, and constant numbness in my hands.  I had some radical changes in lifestyle, including quitting my full time teaching job for a part time position.  These changes helped me manage the symptoms better.

I love to travel and create and play with my kids.  I want the podcast to build a community where our disabilities get the support necessary for us to get out and enjoy life.

This week I reviewed the Nook from Barnes and Noble.

My reviews are simple.  How does the product work in my life?  I haven’t researched the specs or the company goals or read other reviews.  I use the product and share my experience.

I have had my Nook for two months now.  I love it.  Here’s why.

But first, I have to put out there that I love books.  I love the crisp pages and the smell of a freshly cracked binding and the look of countless black words on white pages.  I save my favorite books and collect old stories, especially children’s books.  I want a world where a book -book is always available and adored.

At the same time, I’m excited for the companion world of e-readers, because I see a way where they can co-exist without one replacing the other.

Our house is full of books.  Ask the kids.  They have over 100 books, easily.  At the same time, I need my ereader.  The Nook is not like a computer screen for reading. A computer screen is backlit.  An ereader uses fancy new technology to write with moveable ink on a screen.  You cannot turn it “on” to read in the dark.  I still need lighting like any other book.  What it means, though, is that the Nook doesn’t cause eye-fatigue like a computer screen.  There is a little flickery shuffle when I press the button to turn a page, but I’m getting used to that.

The other big difference between a dedicated ebook reader and a computer is that reading on a computer usually requires sitting up, even with a laptop, and I love reading in bed or lying on the couch (especially when I’m exhausted).  The Nook is perfect for that.

Here is where the Nook shines for me as an accessibility device.  The Nook is light, far lighter than most hardcover releases and many of the thick novels that I like.  I was running into trouble because balancing the book upright in bed was getting more challenging.  I also have fine motor issues where I’m not supposed to hold a hand position for more than a few moments because I can damage the nerves and joints.  My recent novel-reads were stressing me out trying to balance the heavy book.  The Nook can be propped up and I turn pages with the press of a button.  Reading in bed is fun again!

Another huge advantage for me is that I can browse and buy books from home.  Again, I love my local bookstores and I visit when I can, but I have a couple of hurdles.  One is that my kiddos are young.  My boy, especially, finds it far more entertaining to pull books off of shelves than let Mom browse for a new story.  Then, some days the ideas of parking, standing while finding a book, and waiting in line to pay are just too much.  My legs tire so I get frustrated and walk out with nothing since I cannot look at everything that interests me.  The Nook has a great touch-screen feature that displays the covers of books.  By pressing on a cover, I see the summery.  I can then download a sample chapter or two. And all of my samples can follow me anywhere so I can read while water boils or at the park while the kids play.  I can purchase wirelessly.  I have purchased more new releases in the past two months that I had over the six months previously.

A nifty feature that I don’t need but that would help readers with visual challenges is that you can change the font and size of the font on your screen very easily.  All texts can become oversize texts.

Something that I learned as an author is that the e-book market may open doors for smaller publications and niche stories.  Last summer, I posted my novel, The Goblin Queen, on Amazon’s Kindle store for a bargain 1.99.  My goal was to let my friends and family download the story.  But since then others have stumbled across it and are getting to enjoy it.  I don’t have to depend on the traditional publishing structure and massive distribution costs to get the story out for anyone who wants to read it.  Which I think is very cool.  Perhaps we will get to see more shared experiences by people with rare conditions, or fiction for smaller audiences, that can be ‘published’ without the risk of printing massive amounts of paper and accruing huge production costs.  I haven’t made The Goblin Queen availble for the Nook yet, but I need to investigate how to release it on that platform.

I’m also curious how the iPad’s iBookstore will handle epublishing, and whether authors will get to post books directly for their audience.  That’s another discussion.  The iPad isn’t set for release for another few months.  Anyone have ideas how I can get ahold of one to review?  Our community needs the accessible perspective

So there’s my first review! The Nook from an accessibility perspective.  Enjoy your reading  however you like- books, ebooks, magazines, blogs, whatever.  Enjoy the story!

And that's our first podcast.  We have big plans for the future.  Please comment here or email me with questions or ideas for future shows.  I are open to sponsorship and/or invitations to speak or travel to your events.  We are at the beginning of a big adventure.  Let's enjoy the ride!