Guest guest Posted March 5, 1999 Report Share Posted March 5, 1999 Hi JoAnne, I just read your message and I'm so glad you shared it with all of us. It just amazes me how parallel each case seems to be. Alot of the same things you mentioned, my dad also has done. The only difference is they told us 3 months to a year and he has survived this disease for 2 years now. We have never given up on him and he hasn't either. There were days when he couldn't swallow and instead of putting the tube in like the doctors wanted, we waited it out a day and tried the next day to feed him again, he usually starts out by sucking and then is able to eat again. We still try to keep him in the main stream of life and we hope and pray for some answers one day, the doctors atribute his longevity to us keeping him home and around us all the time. My dad also started out not being able to tie his tie and cut his toenails. We tried to explain it to the doctors and we don't feel like he was having problems seeing as much as the perception was just off, maybe like his eye to hand coordination. We had a hard time trying and begging the doctors in the beginning when daddy still looked " normal " and could manage to be " normal " while at the doctor. But we finally found a doctor who listened and agreed that we knew better than they did what he was really like. I enjoyed your message and hope you continue to share with the group. Suzie Quote Link to comment Share on other sites More sharing options...
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