The Change at Disney

In August of 2009 our family took a trip to Disney. In September of 2009 it became apparent that I had something wrong with me. I was having trouble using my arms, experiencing significant weakness and having much trouble holding my head up.

From October to April I visited doctors, physical therapists, neurologists, and eventually visited hospitals in Boston and has tests performed at Duke Medical Center. In the end they diagnosed me and while not terminal my life was changed forever. I will never be better and the disease is progressive

I often think about that trip in August. I remember right before we left my son and I played a small game of horse in which I to put it nicely destroyed him. When in Florida one night my son and I were at a park by ourselves and when leaving both used our long legs to pass much of the crowd and he enjoyed talking about how fast we were walking by ourselves.

Two days later we were going to a stunt show in the late afternoon. With a large seating that one entered from the bottom my oldest son led the way up the vast staircase. As we were about 10 steps up we came up behind an older man, a little heavyset who appeared to be laboring. Many people were stepping around this man who had been moving so slowly and now had all but stopped. I was concerned and stopped and asked the man if he was ok, if there was anything that we could do for him. He chuckled and said he was fine, just fat and soon found a seat. Still it was concerning to see.

As we kept progressing up the stairs, evidently my son wanted to be all the way to the top, I started feeling strange. I have always had knee pain but this was different. It felt like my knees could not lift. I was having a very hard time, if not failing to raise my leg. I stopped and eventually with considerable thought was able to make my legs move the additional steps. The show lasted about an hour so when we left I had recovered and really thought little of it. It seems clear now however that this was the first symptom of my diesease manifesting itself.

I have often thought that trip up the stairs was significant. A beginning up the stairs showing concern for a stranger to, at the top, finding that I could not go on and experiencing a level of pain that signified a sickness that would change the rest of my life. I think there is some kind of reciprocity in that. I wonder if by being nice in that situation it has enabled me to have the treatment that one would desire when sick and unable to do all that they would like. Moreover how would I have felt if looking back at that first symptom of sickness I realized that minutes earlier I had been rude and unconcerned to another person struggling to walk. I am glad I do not have to deal with that feeling.

I tell my son. Be nice. Remember the golden rule. For it truly the case that " there but for the grace of God go I " I found that out in a ten minute span that forever changed my life. Anyone of us could