Show Your Strength!

Don't forget to tune into the MDA Show of Strength Telethon this Sunday!

If you want to learn more about one woman's experience with MD, read The Graceful Art of Falling...

More Frustrating Than You Could Imagine

I often try to be positive in my blog writings.  But having a muscle disorder is more frustrating than you could imagine.  I try to overlook the agitation I feel when something is difficult for me… and eventually it all just sort of spills out.  

Take last week for example.  I finally ordered new pictures to replace the pictures I currently had in a frame on my wall.  The frame is wooden with slots for 8 pictures, four going horizontally and four vertically.  It took me a while to pick out the pictures I wanted to put into the frame, and then had to wait for them to arrive in the mail.  As soon as I received them, I took the frame off the wall and organized the pictures in the frame so that the colors and intensity seemed balanced.  That was all fine- took me about five minutes.  Getting the frame back on the wall was another story.

Since I’m not super tall I already have trouble hanging things.  Weakening arm and shoulder muscles don't help either.  I had to move my desk out of the way to reach where the frame was hanging.  The nails were still in the wall so I thought I could just figure out how it was hanging and get it back up there.  It was not so easy.  I could only get one of the two nails in the right place while the frame kept sliding down the wall.  I was able to catch it several times… until I didn’t.  I could have predicted that was going to happen.  

The frame obviously broke.  And I, in turn, had a small breakdown.  Because sometimes it just sucks to not be able to do something so simple as hanging a damn frame on a wall.  

I can probably fix the frame with wood glue, or get a new frame, but I will need to ask someone’s help to hang it up.  I just never get used to asking for help with something that I should be able to do myself. 

...Having a muscle disorder is more frustrating than you could imagine.

FSH Conference

I would like to take a second to let everyone know about the FSH conference- which is next weekend!  I truly wish I could go.  Info from fshsociety.org to follow...
 
2014 FSHD Connect
The FSH Society's Biennial International Network Meeting for FSHD Patients, Clinicians and Researchers
Saturday-Sunday, August 16-17, 2014
The Westin Boston Waterfront, 425 Summer Street, Boston MA 02210
The 2014 FSHD Connect Meeting will bring together hundreds of patients and family members with top researchers, doctors and health experts for two days of immersive learning and community-building. This year's meeting will feature talks by leaders in the field of FSHD, including reports from major clinical and research centers, question-and-answer panel sessions, and educational workshops. Popular breakout sessions include topics that members have requested, including teenagers and young adults, caregiving, traveling and sports.

View the tentative Program and Agenda HERE
See faculty and breakout speakers HERE
Info and Online meeting registration HERE
Mail-in / fax meeting registration HERE

Visit: http://fshsociety.org/ for more info (info is on the homepage under News and Events).