#CureFSHD Campaign

The FSH Society just finished an amazing campaign: #CureFSHD.  I was super excited to learn about this campaign because I felt like the purpose was to make people more aware of FSHD.  This was exactly my goal in writing The Graceful Art of Falling so I have been a big fan from the very beginning.  I will share some images from the campaign below.  Feel free to check out their website or facebook page for more information.

Free Again!

The Graceful Art of Falling will be available for free on Kindle this weekend!


If you haven't had a chance to buy the book yet, download it for free!

 

Yes, do.

If we can't do this everyday, we should at least try to do something a few times a week.  

Great advice to live by.

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.

Oh, Vermont.

You'll have to forgive me for not posting a blog entry last week... I was on vacation.  Well, sort of.  I went home to visit my family and friends in Vermont.  Vermont is quite lovely in the summer.  The landscape and style of houses still prove to be difficult, though.

I was frustrated the first night I was home with the obstacles in my parents' house.  Things all over the floor: rugs that slide, toys for my nephew, gates for the dogs, steps and stairs to get almost everywhere.  It's like an obstacle course.  The first emotion that hits me is sadness- sadness that I can't work around these things easily, sadness that I couldn't live here anymore.  But then I remember that this isn't my life anymore.  I don't live here.

I go home to see the people I love.  I just need to remember to mentally and physically prepare  myself when I go home.  Prepare myself to be even more vigilant about where I'm walking and how tired I am.   Prepare myself for the unavoidable falls and to do the best I can to make it through the week without falling all over everything.

My mind then drifted to my time living in Boston.  I have no idea how I got around like I did. It's a testament to how much my strength has declined in 5 years.  I wonder if I had stayed in Boston if my strength and coordination would still be like it was.  Maybe.  Or maybe it would have declined just the same and it would have gotten impossible for me to live there. Then what would I have done?  I would not have known that it would be easier for me in New Mexico.  After all, I had never been there before I moved.

I get a little depressed every time I go home.  I am reminded of all the things I cannot do. But, like I said, I go to Vermont to visit the people (and area) I love.  I only go home two weeks a year.  ...Eventually it might need to be two weeks in the summer instead of also going in the winter.  But surely, surely I can handle that.

Book Signing July 19th!

It's official. I will be doing a book signing at the Original Vermont Store on Saturday, July 19 from 10-11:30am! Come on out and visit!

 

Stay Involved!

It's been a while since I've shared other ways to follow the happenings of The Graceful Art of Falling.

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Birthdays

I'm turning 29 in 2 weeks.  29... it sounds so old.  Birthdays and New Year's Eve are two times of year that I secretly dread (or maybe not so secretly).  These important milestones make us think about what we have or have not accomplished in the past year and cause us to reflect on what we have in our lives. 

I (unfortunately) focus on all the things I don't have, first...  I would like to own a house.  I would like to at least be dating the man I'm going to marry (haven't even met him yet).  I would like to be thinking about kids.  I would like to have my career path figured out.  I was sure by the time I was 30 I would have all of these things.

But then, I usually get a hold of myself and realize all the wonderful things I do have in my life. I have a wonderful family and friends.  I have a Master's Degree.  I have 6 years of real-life work experience under my belt.  I have a nice apartment, and am making enough money to have a car, pay for food, and even buy myself something nice once in a while. Perhaps most importantly, I am still walking, still driving, still getting around reasonably well, and still have my freedom.

In defense of my birthday, I actually have had pretty good ones for the past several years.  And, if I focus on the things I have accomplished rather than the things I am still striving for, turning a year older doesn't seem so bad. That being said, I still may decide that I don't want to turn 30, and this might be the first of many 29th birthdays.

Did I Mention I Love to Read?

I'm currently reading a fantastic book series. The series is "The Game" by Terry Schott. The premise is bizarre and really alters your way of thinking about life.  In short, Earth is a planet where avatars from another planet live several lives as a replacement for traditional schooling- youth gain much more knowledge by living and learning from real life experiences. 

What I really enjoy about the books is the emphasis on: 1.Life is just a game, and you receive more points for doing meaningful things, so don't "waste a play"; and 2. Anything is possible on earth- people just don't realize they can do anything.  In the book, very skilled individuals can even learn to fly. 

As one who suffers from a chronic, progressive muscle disorder, I am often perturbed by people who say "you can do anything you put your mind to."  Because sometimes, you physically cannot.  No matter how hard you try.  Recently however, even I have noticed small changes in my body's abilities.

I started practicing yoga last August... only 8 months ago.  And from time to time I will try something in class that I wasn't able to do when I first started.  I am getting better.  My body is getting stronger.  Maybe it's only a small change, and maybe it's not enough to affect the challenges of daily living, but how remarkable it is to notice those small progressions.

I've always thought that muscle strengthening, for me, was a lost cause.  You're constantly taking one step forward for every two steps back.  But my physical therapist will even say things like "I don't think you were able to do that 3 months ago..."  Our bodies are amazing machines, and we need to continually perform maintenance (healthy eating and regular exercise) in order to have the strongest machine possible.

Perhaps with a little extra effort we are able to achieve anything...

Drug Study

First FSH Muscular Dystrophy High-Throughput Drug Discovery Study Published...

 
Read more here.

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.

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!

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.

Last Minute Shopping?

Doing some last minute holiday shopping? Buy The Graceful Art of Falling on Amazon Smile and donate to the FSH Society at the same time!

Find the FSH Society on AmazonSmile.com; it’s just like shopping on Amazon but .5% of your purchase is donated to the FSH Society!

Yoga Healing

The strangest thing happened to me in yoga class the other night.

We were doing "pigeon pose" which is a serious hip stretch.  We are told that you carry emotion in your hips.  If you are really tight in your hips it's because you are holding onto something that is no longer serving you.  I have cried on many occasions while doing hip stretches in yoga class.  Well, most of the time it is my right hip that is the tightest, and your right side represents masculine energy.  There is one visualization that I really like for the pose; on the inhale in the {uncomfortable} stretch you bring light, love, and energy into your body, and on the exhale you send it to a man in your life who has caused you pain.  Recently, this has always been the same guy, a guy who is on my mind more than I would like.  But, on this night, it wasn't my right hip that was tight, and no specific guy popped into my mind during this stretch. 

My left hip was the tight hip. The left hip which represents feminine energy.  And who popped into my head as I was visualizing light, love, and energy? I did.  I listened to our instructor saying, "..this may be 'past' you... and you are not 'past' you anymore, and you will not be 'past' you in your future... forgive yourself and let go of any guilt or negative energy you are holding onto about your past mistakes or decisions." 

I finally cleared up all negative male relationship energy in my life, and who was my focus on now? Me. How interesting, I thought to myself.  I had been spending so much time in the past few months clearing all the clutter away from my brain and my heart, and the only thing left was the issues with myself.

I didn't think about it too much in class, because you are supposed to clear your mind and let things go.  But, I was contemplating this later, thinking about the things I might not have forgiven my 'past' self for.  I remember not always being so nice to my siblings (especially my sister) and even some of my friends in high school.  One might say I was just a normal teenager, but I think some of that anger came from having to deal with muscular dystrophy.  It's always been frustrating.  

Another thing I haven't forgiven my past (or present) self for: not accepting my body.  When my muscles fail and I am on the ground cursing in my head, when I think about something I want to do and then realize how difficult that might be for me, and even my recent acceptance that my body may never be able to give me children... These are all things that I wish were different.  But then I feel guilty for wishing these things were different.  Aren't I supposed to accept my body and myself for what it is and who I am?  Aren't I perfect just the way I am?

It will take many, many more yoga sessions, dedicating the class to myself, and sending myself good energy, to know if this is really something I can do- if I can forgive myself for all past mistakes and decisions.  But I feel like this was an "aha" moment that might be leading me down a path that will really help me heal.

Sharing: My Becker's Story

In the spirit of sharing about other forms of muscular dystrophy, I would like to share this video.  It is specifically about Becker's MD, but many of the symptoms and facts conveyed are true for other muscle disorders as well.

What is Becker's MD?

You may even be inspired to click on other videos about MD on YouTube!

FSH Society

~FSH Society partners with Wellstone Muscular Dystrophy Cooperative Research Center~

"There are currently no clinical trials of novel therapeutics for FSHD ongoing in the United States because of a lack of relevant preclinical data to direct development of therapeutic targets to disease mechanisms. The Wellstone Center seeks to change that. 

'FSHD leads to severe muscle weakness and our Center's therapeutic approaches will focus on development of drugs that target disease genes, as well as drugs that improve muscle strength,' says Center Director Charles P. Emerson Jr, PhD, professor of cell & developmental biology and neurology. 'The therapeutic approaches being developed by our center will have broad application to the treatment of other muscular dystrophies and other debilitating medical conditions of muscle weakness including aging, muscle injury and confined bed rest.'"

FSH MD

FSH MD occurs in 7 out of 100,000 people and is the most common form of muscular dystrophy.

People with FSHD comprise about 25% of all muscular dystrophy sufferers.  

There is no cure.

Friends of FSH Research is a wonderful organization dedicated to finding a cure for FSH muscular dystrophy! If you're looking for a way to support the cause, consider donating to them.