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...

04 November 2011 - by ~ 0 Comments

Enable Viacam

Many of us with DMD use a head tracking mouse to operate our computers. These typically are comprised of a special infrared camera and a reflective dot that is affixed to the users face and together they convert movement of the head to the mouse cursor. These systems can be expensive but there is a […]

21 October 2011 - by ~ 0 Comments

Voice for Independent Living

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 […]

21 September 2011 - by ~ 2 Comments

Get Back in the Game

altcontroller

There was a time when I used to play a lot driving and racing games on my computer and I had a lot of fun playing them. I was never really that good at driving the cars but even crashing them and flipping them over was fun in itself. The difficulty came when I started […]

08 September 2011 - by ~ 0 Comments

Dragon NaturallySpeaking 11

dns11pro

Okay, guys you asked for it and giving it to you. Two weeks ago I became very disappointed in the voice recognition option on Windows. I’m not crazy about having to use voice activated software, but enough is enough. I figured I had to pay a little bit more so why not go and invest […]

30 August 2011 - by ~ 0 Comments

E-books

I browse through the catalog of e-books on Amazon.com, find a book I want and download it to my kindle reader on my PC. In a matter of seconds, the book is on my computer and ready to be read. It is so convenient, and for a person with a disability, like me, it makes […]

06 August 2011 - by ~ 1 Comment

Momentary 45

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 […]

09 July 2011 - by ~ 0 Comments

Ventilator go BOOM!

boom

Wednesday before last I had my LTV 800 ventilator traded out for preventative maintenance as usual. At 1:30 in afternoon the RT from my provider came out to exchange the vent with one freshly rebuilt and reconditioned vent directly from Viasys Healthcare. Everything went without a hitch. My settings were transferred to the new vent […]

09 April 2011 - by ~ 0 Comments

Nobody’s Business

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 […]

05 March 2011 - by ~ 0 Comments

The Pain Truth

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 […]

24 February 2011 - by ~ 0 Comments

Medication Saga

staph

So, I’ve been sparring with this tracheal infection since the end of last July. It is one of those nagging things that just would not go away! Two different physicians – my internist and ENT specialist – took turns at knocking out this staph, a bug common to those of us with tracheostomy tubes in […]