Does what it says on the tin! Notes to self. A diary, if you will, recounting and recalling my life thus far, with and without MND.
Sunday, 10 October 2010
Interview with Steve (Northwest Assistive Technology )
Northwest Assistive Technology provided me with advice, assistance and equipment: they asked if they could interview me for their new web-site.
Hi, my name is KB and I live with my daughter in an adapted house. I have Motor Neurone Disease (MND) or Amyotrophic lateral sclerosis (ALS) a neurological condition that destroys upper and/or lower motor neurones that a has effectively rendered me tetraplegic.
I am a wheelchair user which I operate with residual movement of my right hand. I use Assistive technology to help me normalise my environment, this includes a Possum Freedom system that allows hands free operation of my door intercom/phone and gives me a one button press call system to my daughter at night. My main piece of AT is the My-Tobii eye gaze system that is fantastic. It prevents me going insane; in fact if I am truthful it is the difference between wanting to live or just giving up. This sound dramatic but with my condition it is the isolation, not being able to communicate with the outside world that is so disheartening.
The system allows full use of computer applications by means of just sitting in front of the computer screen that hangs from my bed frame. The sensors that are embedded in the computer lock onto my eye-gaze when I dock into the ‘virtual box’ and follow my eye movement around the screen, if I dwell on an icon or application it will activate. If the object on screen is small I can select a zoom facility by activating a ghost sub-menu that brings up a variety of options, it all sounds so complicated but when you have been muted, muted in the way of using a computer for so long, you persevere. I can type pretty quickly now.
I can have a real time conversation with my family that live around the world by the use of skype a brilliant invention that gives a audio/visual real-time conversation by means of a web-cam, in fact my consultant who is based at Hope hospital has suggested that we use it for clinic, which would help me enormously because when I have to go and see him it is so draining. I have to order an ambulance and then get jolted along the 20 odd miles to Hope and by the time I have been pushed and pulled through the various stages of the hospital and eventually sit in front of him, I am knackered and unable to speak.
Northwest assistive technology have been brilliant and the reason I am taking part in this web project is to spread the word to other people in my condition that are or will be unable to use everyday appliances.