Appreciation

I am lucky to be surrounded by a large group of loving, caring people who are helping me navigate. I feel like the guy in the Verizon ads who has a network following him. First of all is my wife, Susan, who has had to mentally deal with the fact that I have a terminal disease. Susan keeps the house running and has mastered many care-giving techniques. She has truly been a marvel. My brother Peter and sisters Penny and Mary have given me great support. My daughter Andrea who lives in CA is a wonderful, caring person. She and I regularly video-conference which allows me to keep up with my grandchildren. My sons Robert and Peter are nearby and help reduce Susan’s burden. I was fortunate to have two incredibly good doctors at GWU who lead me through the long process of diagnosis. Dr. Perry Richardson was a master at EMG analysis, and Raul Mandler, refused to believe that I had ALS, taking me through an incredible series of tests. At the VA, where I received most of my care, Dr. Elizabeth Lindenberger, Dr. Marshall Balish, and all of the professionals who treated me at the ALS clinic were very impressive. I was also very lucky after looking for a long time to find Matilda Bonsu who keeps my act together every day and gives Susan a chance to get out of the house. Also on my list are the people from Hospice, led by Dr. Hank Willner, RN Carol Stewart, nursing aid Gifty Suka, volunteer Ellen Maland and PT Lynn Tidwell. I’m also indebted to Dr. Zachary Simmons who gave me ideas on how to use the questionnaires I have developed. I have an amazing number of regular visitors who help fill my days. Many of these wonderful people are acquaintances of people I had never known before. I was surprised to find that neighbors and good friends somehow turned away, perhaps because they didn’t know how to deal with my condition. Among my favorite regular visitors are Ron Silberman, Alan Parker, Ellen Maland (a hospice volunteer who helped me organize my stamp collection) and Meghan Baivier (who is at the helm of the computer writing this). Thanks also to nursing technician Deneen Palmer whose vast experience in ALS care made my questionnaires more complete and useful.