A message for parents of children with Duchenne muscular dystrophy. People with Duchenne muscular dystrophy can expect to live a great life full of family, friends and those they choose to spend with their time. They can expect to experience the good things in life and reach their goals and accomplish many things and not […]
Candle lit. Prayer said. Respects paid. Today marks thirty-eight years since Duchenne muscular dystrophy took my brother, Joseph, away. No matter how far removed I am from that day, the loss still looms and inflicts a harsh emotional jab. At fifteen, he didn’t even have a chance to taste life, and I never had the […]
I am a member of Voice for Independent Living, a group that advocates for the rights of people with disabilities to live independently in their communities. We write to, and visit our legislator’s offices, and attend rallys. The group also provides training in advocacy and community organizing. Most of the work of the group these […]
Turning 45 the other day and beating Duchenne muscular dystrophy to the punch one more time has definitely given me an extreme sense of satisfaction. Again, I managed to bob and weave my way around this killer of a disease, and the grand feeling of accomplishment never gets old, even at my age. Score another […]
At a Spring Training game a few weeks ago, my nurse James and I settled into the disabled seating area to enjoy a relaxing afternoon. A non-disabled older man, seated to our immediate right with his scooter dependent wife next to him, initiated some friendly banter with James. After all, you would expect an exchange […]
Unless one has been living in huge force field that allows us to move about the world pain free (that is a wonderful concept) at some point in time you have suffered from pain. I have been one of those people for quite some time that did not experience a lot of pain in my […]
How much medical equipment does one need? If you have DMD or a similar condition then the answer may be A LOT. I am certainty in the A LOT category. Let’s see if I can name everything I have: Primary Power Wheelchair (obviously) with tilt/recline seating, seat cushion, micro Joystick. Backup Power Wheelchair with tilt/recline […]
In philosophy there is an old thought experiment that goes something like this: how do you know that anything is real? Let’s say that you were actually a brain kept alive in a large glass jar, a vat of chemicals, wired up with electrodes and fed nutrients intravenously. If the computer was powerful enough, it […]
I was going to write and publish this post yesterday, but my brain was far from cooperating. Strange how difficult it is to write when your mind is preoccupied with the potential for being electrocuted by a little metal time-bomb inside your chest! Here’s the scoop… Yesterday was my quarterly visit to the Orlando Heart […]
September 12th has always been a somber day for me. Duchenne muscular dystrophy (DMD) claimed my brother Joseph on this day thirty-six years ago, and I’m still feeling the pain. This disease nudges me every single day, but on 9/12 it slaps me extra hard across the face with the white glove and offers a […]
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