Exploring New Horizons for Duchenne MD

DMD Pioneers is for people with Duchenne's muscular dystrophy who have beaten the odds and are continuing to thrive despite the upwards battle they face. This is our blog...

24 May 2010 - by ~ 0 Comments

The CoughAssist Machine and Self-Advocacy

Cough Assist

I don’t think it would be an exaggeration to say that I would be dead today if not for the CoughAssist Mechanical Insufflator-Exsufflator. The what? OK, let’s just call it the CoughAssist. What is it? Well, it does exactly what it says. It is a mechanical device attached to a mouthpiece or mask which assists people […]

23 May 2010 - by ~ 0 Comments

Keeping the Pace

It has been three weeks since my bold pacemaker surgery. So what’s it like having a device the size of a Silver Dollar implanted into my chest. Actually, I can hardly tell except for a three inch scare that seems to be fading away. The first time I felt the pacemaker working was the week […]

19 May 2010 - by ~ 0 Comments

iFib

I cannot believe that six whole months have soared by since I was given a new lease on life. A tiny device called an ICD was surgically implanted beneath a patch of muscle tissue in my chest. Since I have this disease known as Duchenne muscular dystrophy, which has been ravaging through my body over […]

20 April 2010 - by ~ 1 Comment

Blogger Introduction: Scott Sands

Hello, Scott Sands here! You may know me from my personal blog, SCOTT SANDS ALIVE, or from Facebook, or Twitter, or e-mail, or this Yahoo group called DMD Pioneers. Like the rest of my DMD brothers, I am not exactly healthy by any means. In fact, I am the living definition of a physical wreck. […]

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07 April 2010 - by ~ 0 Comments

A New DMD Resource

I am happy to report that “Children and Young Adults with Muscular Dystrophy: An Annotated Bibliography” is available on the Muscular Dystrophy Association’s website. The Annotated Bibliography is the first bibliography of books by and about persons with muscular dystrophy, according to the MDA. Funding for the annotated bibliography came from a Carnegie-Whitney Award from […]

04 April 2010 - by ~ 3 Comments

Depression and Duchenne Muscular Dystrophy

I was first prescribed antidepressant when I was 17 years of age as a way to help me cope with the challenges associated with the progression of DMD. At the time I thought little of the connection between depression and DMD, I was just not happy.  My parents noticed my downward spiral before I did.  […]

01 April 2010 - by ~ 1 Comment

Blogger Introduction: Sean

Hi. My name is Sean. I am a blogger and unpublished fiction writer from Vermont. That’s the US state between New York and New Hampshire, to the geographically challenged. I was diagnosed with Duchenne Muscular Dystrophy as a baby. My brother had been diagnosed before I was born, at 6 years old. My parents were already far too familiar […]

30 March 2010 - by ~ 2 Comments

The Usual Pains

Hey everyone!  It’s yet another nice day in my world; why nice because I go on to live another day despite having DMD.  I wanted to blog yesterday but I was dealing with major back pain and I was on some high kicking meds that just downright make me silly.  You come to expect some […]

28 March 2010 - by ~ 1 Comment

Blogger Introduction: Charles

I have been a member of the DMD Pioneers Mailing List on Yahoo! Groups from the beginning. Along the way I have been able to learn a lot of valuable information but most importantly I have been able to make a connection with so many incredible people with DMD and other similar conditions. Many of the friends […]

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24 March 2010 - by ~ 1 Comment

Blogger Introduction: Michael

Hello All and welcome to the lives of those of us with Duchenne Muscular Dystrophy or DMD for short.  We call ourselves DMD Pioneers because we have long surpassed the projected “prognosis,” of this relentless disease I refer to as the monster within.  Anyway, thank you for joining us as we give our first hand look at the […]