Labor Day, September 6, 2010, Nashville, Tennessee~

Johnathon Sandusky here.  I thought I would write while I am taking a break from answering phones.  I am helping out at the phone bank at our local television station for the annual Muscular Dystrophy Association's telethon.  I have a couple of hours to kill.

I wish I could say that a cure has been found for MD (or any of the other 41 neuromuscular diseases), but no go.  We're on the brink of finding a cure, but we're just not there yet.  Very frustrating, especially to those of us who live with MD or the other diseases.  I would give my eyeteeth (and just about everything else) to be able to rise from my wheelchair or to be able to breathe on my own without assistance!

The mere fact that I am here naerly 13 years later has been nothing short of miraculous.  When I was first diagnosed with Duchenne's muscular dystrophy at the age of one, doctors said I'd be dead by the age of five.  Well, I fooled 'em:  I'm still here, plugging away, as best as I can! 

I am grateful for every day I wake up breathing or above ground!  Lots of people who have what I do don't have it nearly as good as I do; I consider myself extremely blessed!

Every day, I get weaker.  I can feel it, yet I have a sense of strength that belies what I am going through.  I continue to breathe, my heart continues to beat strongly, and I have a very strong will to beat this thing before it beats me (though it tries to!).

So I have a respirator and a hole in my throat.  I can still talk.  And breathe.  I learned how to do it at the hospital after I got it done, and it's not as difficult as it sounds; I just have to remember to stop talking before the respirator breathes in, or else I try to choke myself.  LOL  NOT fun when that  happens! 

Look at the late Mattie Stepanek:  he had a respirator and a trache just like me, but he talked, and he made quite an impact on the world, even though he was only thirteen years old. 

He is and will always be one of my heroes.

There's also a bluegrass singer from Kentucky named Bradley Walker who has MD, and he is the lead vocalist of a bluegrass band.  He is very good.  And then there's Calvin Ray Johnson, who sings country and rockabilly music.  He has MD too.  Yet both men refuse to let MD stop them from doing what they love: entertaining people with their God-given talents.  They are my heroes as well.

I try to continue signing for my church; it isn't easy at times (my hands and fingers often don't co-operate), but I still try, nevertheless.  It's because I am very determined.  I also write (mostly on the computer; it's easier than by doing it by hand), and I still play my video games:  I'm still very much addicted to them as I was when I was younger! LOL

I have written one book already, and am seriously thinking of doing another.  I want to continue my story where I left off at my last book.  When I get it published, all proceeds will go to the Muscular Dystrophy Association, a cause near and very dear to my heart, as I have MD myself.  I have MD, but I want to help others who are going through the same thing I am.

People have helped me all these years; now it's my turn to give back as a way of saying thank you.

Well, it's time for me to get some grub in me; my stomach is really thunderin' (severe thunderstorm warning for Belly County, or in this case, Johnathon County! LOL).  I will write in here again soon; until then, this is Johnathon saying so long, and Happy Labor Day!  And don't forget to give to the MDA; you won't be sorry, and you will feel good doing it because you'll be helping people like me!!  God bless you always!

~Love, your friend in Tennessee, Johnathon Sandusky.  :D