Considering the rarity of our disease, I believe we all start out very confused, similar to 1959 when I was hospitalized for polio. I notice a similarity in my reaction and behavior while being treated for both maladies. At first I was frightened, then confused..."Why me?", "Will I get better than I am right now?", "How will my friends and family react?", "Can I still do the things I used to do?"

Finally, I believe acceptance of the current situation, education for those that matter to us and making the decision to move on as best as possible is the best we can do unless we just surrender. I saw someone surrender in the 1950s. They came down with polio and refused to dedicate themselves to physical therapy. They spent the rest of their life in a wheelchair while folks shook their heads and wondered why the person didn't even try to get better.