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Last week was another tough week for me as I attempted to fight off a head cold that had affected Tracey and the girls a week prior. Actually, I think he did a pretty good job fighting it off as it sort of came and went over a 48-hour period. It was the type of cold where you just want to put your head down on the pillow and go to sleep. Not too much different from my every day. It did however make me that much weaker, which I did not think was possible. I experienced much more difficulty getting up out of chairs and walking. Although I did not have any falls, this was the most unsteady I have felt on my feet since my diagnosis. Obviously, my concern was that this was a sign of things to come. I am constantly saying to myself, and have since day one, that if this is the worst that it gets, then I can live with this. There have been some documented cases, although extremely rare, where progression suddenly stops. Although I am hopeful for the best, I feel that if the disease were to stop progressing, then that would be a happy medium, and one which I would gladly accept.
After visiting with the occupational and physical therapists, it was time to meet with the neurologist. This visit is beginning to seem a lot like the movie Groundhog Day. In fact, before she came into the room, I explained to the student nurses how my visit will typically end with an "everything is great-you’re breathing and swallowing. See you in three months" and although my neurologist didn't quite put it that way, I did get my obligatory thumbs up. We briefly discussed any potential clinical trials, of which she said there were two possibly starting sometime in the winter. Although I remain hopeful, the reality is that it will be very difficult for me to get into a clinical trial due to my onset and symptom date. For the most part, the majority of clinical trials for ALS patients exclude patients, whose official diagnosis date or symptom onset date, is greater than three years. For better or for worse, I initially reported my symptom onset date as May 2006. My first ALS diagnosis was in March 2007 with a secondary confirming diagnosis in November 2007. So, depending on how you want to look at, I'm officially somewhere between three and four years into this thing.