FSH Documentary

This is an amazing documentary about living with FSH musclular dystrophy.



It's worth the watch.

Winter Weather

While I love Vermont with all my heart, the winter weather is miserable.  I was watching the weather before I left New Mexico.  It was supposed to be fairly mild with no precipitation for the week.  It obviously couldn't be that easy for me.

I got home on a Sunday evening, it was humid out, but not raining.  I love the humidity.  I fly into Albany which is about an hour and a half from our house in south-western Vermont.

"Everything's covered with ice," my mom said to me as we are leaving the airport.  "Your father said to call when we get close and he'll put some salt on the deck." 

The roads weren't bad, the temperature wasn't too cold, but it had rained and then the temperature dropped, and everything was indeed covered with ice.  Icicles were hanging from the mailbox, the trees, the side of the house, and the driveway... oh our driveway, which I'm pretty sure every one of my friends has driven/slid off at some point during our high school career... it was like an ice skating rink.

After the challenge of getting me into the house when we got home (this included both my mom and dad helping me after I almost got taken out by one of our very large dogs), I stayed inside for three days.  I didn't have to go out, so why go?  It got a little warmer toward the end of the week so the terrain was not so treacherous.  I was able to go out and hang out with friends. 

Maybe I needed a reminder of how impossible winter weather is for me.  As I am considering leaving New Mexico for the east coast, I have to very strategically figure out where I can be that isn't too far from home, but also somewhere that doesn't get too much (if any) snow/freezing rain/ice.  Because I can't hack it.  It's not so much of an issue when I don't need to be anywhere, but if I had a job, had to run errands, etc., it would make it very difficult.  Just one more pain in the ass side effect of having a muscle disorder that affects your mobility.

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Raising Awareness

In promoting The Graceful Art of Falling I have become much more aware of how many individuals are raising awareness about muscle disorders and disabilities.  I am so impressed with all that is out there and believe that we truly can make a difference.

"When American Girl announced this week that its 2014 Girl of the Year doll was a blond ballet dancer named Isabelle, at least one avid fan was crestfallen: 10-year-old Melissa Shang of Pennsylvania. And so Melissa, who has muscular dystrophy, did something about it: She launched a Change.org petition asking Mattel (which owns American Girl) to create a doll with a disability. The online petition has picked up 15,000 signatures in less than a week."

Read the full article here.  And please sign the petition!

We Are All In This Together

Mr. Brad Miller of 'My Beckers Story' so kindly asked me to send him something to post on his blog!  You can see the guest blog post here.  Please follow his blog and follow him on facebook and twitter. 

"The best thing about sharing my story is the opportunity it gives me to meet others. Like I have said before no matter what form of Muscular Dystrophy someone has I truly believe that we are all in this "Together". So as the My Becker's Story blog enters its fifth year it is my plan to make people more aware of the many different forms of Muscular Dystrophy. Recently I had the opportunity to connect with the author of The Graceful Art of Falling a book created by L. White who has chosen to share her story of what it is like living with FSH MD (or FSHD)." 

Thanks so much for your support, Brad!

MDA Support

"Have you met Jenny?" I was asked as I sat at a table at the MDA holiday party.  

"No, I haven't, it's so nice to meet you," I said as I twisted around in my chair to face her.

"So, you wrote a book?"  Jenny asked.

"Yes, I just published it in September, it is about my experiences with FSH MD."

"Oh, how does that affect you, if you don't mind me asking?"

"Well, it affects my facial muscles, my shoulders, arms, and legs... among other things.  Stairs are very hard for me."

"When did you first start having symptoms?  How old are you now?"

"When I was 12, and I'm 28 now." 

"But you're so young... that's terrible."

"It is... there are even younger ones here who are going through this, or worse."  I replied as I looked around the room.  At least half a dozen kids, all boys, were obviously afflicted with some type of muscle disorder. 

"I didn't start getting symptoms until I was older, but many of my family members on my dad's side have OPMD. My eyes are getting bad, and I am having trouble swallowing,"  Jenny continues.

"I'm sorry to hear that, what about your kids?"  I asked as her son, who must have been about 10, sat next to her listening to our conversation.

"Not yet, but I wish I knew I had this before I started having kids, I don't know if I would have made a different decision, but maybe..." She said.

I couldn't help but wonder how her son felt about her saying this... but, he seemed like an intuitive kid.  Maybe he knows she just says that out of concern and love for her children. 

"Well, we will definitely read your book, I'm sure my husband will enjoy it too, he is in a wheelchair."  She concludes.

This was the first MDA "event", besides the walk in 2011, that I had attended.  There were so many families, with young kids, who obviously depended on this community for support.  When I go to things like this, I am reminded how much bigger this is.  Bigger than just me, and bigger than just FSH MD.  It makes me want to work harder to increase awareness and continue to build networks with others who are doing the same.

Happy 2014! May the coming year see better treatments and progress toward a cure for muscle disorders.