Wow - I am overwhelmed by everyone's warm welcome and so encouraged by the support. Thank you! Bittersweet to say the least. I felt so alone, yet unfortunately by the responses I am not. I appreciate and value your friendship(s).
I often feel like John and I are traveling down this dark hall looking for the right room with all the answers. Sadly I have learned that there is no door. So, I have read, researched and tried to the best of my ability to make the best decisions as possible. We are on our third neurologist and I am finally comfortable that this one is the best fit - for now. That said, we go in every six months he checks John over, asks for any new symptoms' and insights-sometimes tries a new med that never works, pats us on the head and sends us home until the next visit. We do have periods of physical and speech therapy but we are pretty much left on our own till the next visit. John would prefer not to know anything about what is happening to him, so I often travel down that hall way alone. I will definitely check out the trials being run in Chicago (2 hours away - sweet!) and also the SmartPatients site. With sincere thanks, Alice