Lottie and Anita,

I agree fully with what you are saying. In addition to the swallowing difficulties, John was starting to lose his hearing, as well, he struggled with postural hypotension, not to mention the dental problems that were starting to manifest themselves. The only solution we were given for the swallowing problems was to put him on a feeding tube for life, which, of course, given his efforts in getting his esophagus opened, John fought back and would not accept it. As for the hypotension, he was prescribed steroids for a while but that did not help. What's hard was the steroids had long term side effects of their own. It seems to me that when it comes to late onset side effects, we are dealing with, at best, a patchwork approach.