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. Wait, did I say “living”? Indeed, despite everything I have been through with this rotten disease, I have somehow miraculously managed to keep chugging along. I have the wheelchair thing, the scoliosis thing, the dysphagia thing, the macroglossia thing, and the muscle-wasting thing. But wait, there’s more! I have a tracheostomy tube jammed in my neck through which I receive a full-time flow of air from a ventilator. I have an ICD (pacemaker/defibrillator) in my chest, and I am a sitting duck just waiting for that device to shock the living daylights out of me at any moment. Yep, my heart isn’t exactly in the best condition, but hey, it’s still beating, so that’s a good thing.

Besides the machines, devices and countless medications that keep this rickety, old, deformed, broken body going, a positive attitude is the key to my being. I never let this disease keep me down, nor do I allow it to prevent my accomplishments or shatter my dreams. I consider myself a stubborn old bugger who refuses to give up, wane or go down without a fight. I am 45-years-young going on 46, 47, 48, 49…well, you get the idea. My older brother, Joseph, wasn’t as fortunate. He only made it to 15 before DMD claimed his soul. But I vowed many years ago to get enough out of my life for the both of us, and I know he would be proud.

I am a college graduate with a degree in journalism, published writer and amateur photographer. I have an extraordinary zest for life, and I appreciate every minute of every day. Life as a man with Duchenne is short, so I take nothing for granted and push myself to the limits whenever I can. Born and raised in Queens, New York, I now worship the sun in the land of Disney and the giant mouse – Orlando, Florida. If you yearn for more details, add me as a friend on Facebook or check out my blog at www.scottsandsalive.com.


  • Stephen King

    Because of you, I am planning for my 40s!