January 31, '00

        We went to Brigham and Women's Hospital to get a second opinion on Al's illness. It was confirmed. It is the beginning symptoms of Lou Gehrig's disease (ALS) not Lyme's Disease that we had a slight hope about. The Lyme Disease that showed a slight positive result was nothing according to Dr. Amato. He said to a general physician it might mean something but to a neurologist it means nothing. He told us about 3 trial clinics that are going on for medicine that hopefully helps slow down the paralysis process. We went home with that information and Al has decided to try one which is at Mass. General and the medicine initials are BDNF. He will take this each day and have to go to Boston every two weeks to be tested for 2 months, then every 3 months. It is a 12 months trial. Half the people get sugar medicine and the other half get the real medicine. Let's pray he gets the real medicine! After 12 months if the medicine proved helpful he can go on the real medicine regardless of if he was taking the sugar medicine or not; and whether it is FDA approved or not. At this point it's our only hope. The medicine that is already FDA approved prolongs his life for 2 or 3 months but doesn't seem to slow down the process. It can ruin his liver and it cost $800 a month so he decided not to do that. He is in great spirits all things considering. We make jokes about what different things might happen to his body, how we picture it and how we are going to deal with it. He thinks it's scary that I will be taking care of him! I don't blame him. I tell him he will be at my mercy and he could be in big trouble!