mich5, thanks for those kind words, I appreciate it. I think we went through the (what sounds like) typical phases that most of y'all went through. My wife first suspected something was wrong during our six month stay in Germany (Jan. thru June, 2010). There is a story there, but I'll skip it for now. Anyway, she started having leg cramps at night, severe enough to jerk her out of a sound sleep, and make her walk around the apartment for a few minutes. We (I) didn't think all that much of it at the time, figured maybe a lack of exercise, since she was mostly bound to a desk with her computer all day, every day, trying to keep her lab running back home in Nashville. We came back home the first week of July, 2010, and things were still o.k. In Aug. or Sept. she took a fall on the steps going up to her lab, scratched and bruised her up pretty good, but no broken bones. Still, I was not putting it together (she was). I thought she was just in too big a rush, needed to slow down a bit. She knew better, but didn't tell me until a little while later (maybe in Oct.) that she suspected ALS. Even then, I couldn't believe that it could be true. She seemed strong enough to me, but I guess everyone knows their own body better than anyone else, even their spouses. We didn't talk too much more about it until this past summer when we were in Italy at another meeting (she travels around quite a bit with her science, I go with her most of the time). One evening while we were having a wonderful dinner in the hotel where we were staying, she got this coughing attack. She excused herself, and went to the ladies room. After a sufficient amount of time had passed for her to return, I began to worry, and went to check on her. I could hear her through the door, still coughing, so I went in (hoping no other women were in there, thankfully, there wasn't any). By this time, she was red in the face, and struggling for air, gasping between coughs. I started slapping her on the back and finally dislodged enough mucus and phlegm (same thing?) that she started to recover.....thank God! That was the night that she told me that she was pretty sure she had it. I was devastated. Now I had to take her seriously. This was June 7th, 2011.
When we returned home, we began our series of Dr.'s visits, specialists visits, tests of every kind (y'all know all of 'em), nobody giving her a definite diagnosis. As a matter of fact, they said one thing they knew for sure was that it wasn't Myositis, cancer, or ALS! Of course, we were elated....that day. Only to learn later (Dec. 5th, 2012 to be exact) that, Yes, it was indeed this dread disease. Crushed, stunned, numb, every other word you can insert here. So, looking back, my wife actually knew almost two years before all the best Dr.'s and specialists we could get (and correctly diagnosed herself) that she had ALS.
She is the most intelligent person, male or female, I have ever known. Also the most precious, loving, and generous....of course, I may be a little biased. This disease does not care how smart you are, how accomplished you may be, how successful you have become, who you are, where you live, and on and on. None of that matters. She is taking it all in stride, not happy about it by any means, but has recognized that it is what it is. In the meantime, she is too busy to dwell on it, as such. She is taking her meds, dealing with the coughs, twitches, weak voice and other discomforts, but continuing to work and keep her science moving forward, which I find very inspiring and admirable. She will fight until the bitter end, I know. And if she can do that, surely I can too.
Sorry for the long story, but I wanted to get it out there. Everyone has theirs, this is ours. I hate this disease, but I admire those of you who have it, and the other similar ones, and are still trying to maintain your dignity and quality of life. I am determined to help her do that until the very end.
As far as quitting and drawing SSD, that will be her decision (based on the rate of progression, obviously).
All I can say to everyone is:
Hang tough!
Steve