The reason so much time has elapsed between entries is that i lost most of the ability to move my hands and arms back in March. Although precious little progress has been towards a cure or even an effective treatment for this disease, the advances in equipment and technology have been miraculous. After going into respiratory failure in January, i elected to go on a ventilator and the Respironics Trilogy is the vent i use at home. i am fortunate that i do not have to stay on the vent full time, but the compact size we can easily take it with us so we can get out and about. The power rehab chair and handicap van provide an easy way to get to all the places i need and want to go. Last is my newest miracle, the Tobii communication device, which will provide my voice when and if i lose my ability to speak. For now the device has an eye gaze tracking system that allowed me to type this entire blog entry using my eyes and i look forward to sharing more of my thoughts and experiences on this journey. ALS still sucks but now i have the tools to live to my fullest ability, and i don't plan on wasting a minute of it.
Saturday, December 15, 2012
eye typed this
Welcome back my friends to the blog that i began so long ago. Today i choose not to focus on the oh so many frustrating aspects of living with ALS and there are some real crazy things myself and other PALS and their families deal with daily.