Thank you to Christine B, Alpaca and Cheryld. Your words are very helpful as I go through this incredibly hard journey. One of the most frustrating things for me is that I am still on the feeding tube. I have made a lot of progress regarding swallowing. I went to the swallowing "boot camp" and now see a swallowing specialist three times a week. At first, I couldn't even swallow water and had to carry a spit cup wherever I went. I now primarily have problems if I can't get the type of food that I can swallow. I sure do miss those barbecued ribs that I used to have. I can eat things like bananas and yogurt and I am still working to broaden the type of foods that I can eat. I may get the esophageal stretch and am going to look into an appliance that my dentist recommended the other day. The other part of the issue with eating is that it is such a social event and I am working hard to keep connected even though I have to make special arrangements for my nutrition. I have gotten some information from the Oley Foundation and they have some very inspiring stories there.
You are right-it is very important that I keep myself as busy as possible so I avoid the depression that can come on when I am not busy. Thanks again and I will keep in touch.