Hi all,
I've been popping in here for a month or so. Truth be told, I check in almost everyday and it has been really helpful to me. I thought it was about time I introduced myself. I'm 48 and blessed with three kids and a wonderful wife. I was diagnosed with ALS in September 09, confirmed in October. For me it is limb onset and so far not terribly fast. I am still walking, I have a cane, but I usually leave it in the car and go slow. My hands, especially my right hand and thumbs are really weak, so I'm a two fingered typer.
It has been hard for me to make the transition to letting others know. Until recently, unless you knew me very well, it would be hard to tell something was wrong. I told my family and close friends, but not many others. When you put ALS on the table it changes every relationship, colors every conversation and I wasn't ready for that, still aren't. But, I think maybe that's a little selfish of me.
I am blessed to live near an ALS research clinic, the doctors are excellent. We have a strong ALSA support group. I am embarassed and almost ashamed that I have these resources available to me and so many of the people on this forum do not.
The ceftriaxone trial has been open to me, but I had held off, mostly because it is so aggressive and the thought of the tube sticking out of me freaks me out - and I naively thought I had time. But, my lung function has dropped to 70%, which is getting close to the threshold for eligibility. I also found out you can't be on a bipap before you enter the trial, but you can as soon as you enter, and I want to get a bipap as soon as possible. Also, this is the only trial in phase 3. So, I'm going in - I go in Monday for final screening and should be "fitted out" the next week. I'll report back here on how it's going.
A note on the screen name - I wanted to keep it simple, name and initial, like JoelC, BarryG, JeffP, but TomB doesn't have the feel I was shooting for, so I had to add the Y. I'm not happy with it, but, oh well.
I am amazed and humbled by the faith and courage of the people on this forum. And the humor - I check the jokes thread daily. I hope to get to know you all better and I hope to be able to help and contribute too.
Tom
