Hi Pat,
To answer your question, I was diagnosed in 2009 with a limb onset, within a year I was on BiPAP. I began using a power wheelchair about 2 1/2 years ago and I now need to use noninvasive ventilation 24/ 7. I have no bulbar symptoms so far and my weight is stable (no PEG). Symptoms of weakness and paralysis continued to advance and I'm slowly losing function of my hands. I now use voice recognition software for computer input. In spite of this I have tried to focus my attention to learning everything I can about ALS and its management in order to maintain the best quality of life possible as symptoms advance. Fortunately, I found that I have been able to adapt and adjust to the loss of function in ways that work for me most of the time, and this allows me to enjoy what is still possible. ALS forced me to retire as a physician and I really do miss my work, however my training and experience have really helped understand what is happening to me and it also helps me find the best options available so that I can continue to enjoy my life and the people I love. It is true that everyday is a struggle one way or another ( Hoyer transfers are pain); nevertheless, I can usually find a way to deal with problems in ways that works.
I am optimistic that progress in science and technology will continue to increase at an ever-faster pace and so there will eventually be answers and effective treatment for all of us.
I'm glad I that I joined this forum because of its sense of community and how much people care about one another.
Best wishes,
Eliot