So we are headed home. We are currently in Minneapolis enjoying an incredible thunderstorm. We had planned to take the light rail downtown and walk around the river trails, but the weather doesn't seem to be cooperating. We are holed up for the time being with numerous families with little kids who have all ventured here for summer vacation at the Mall of America. I didn't realize that a mall could be a "destination". We did get over there for a while yesterday and it is pretty amazing with a huge amusement park set up in the middle. But I don't think it will be high on my list for a return visit any time soon.
My last test, an EMG, went ok. They set you up with these electric shocks up and down your legs and arms to see how the nervies are responing to and sending information. As I had assumed, things are still pretty dead from the knees down. It hasn't spread into the thighs or upper body. The tests measured about the same as a year ago, so that is good. The neurologist I met with later put me through a number of standard tests for strength, balance, response to heat and cold, etc, and again was about the same as last year. My hope had been for some improvement; my expectation was status quo and that is pretty much how it turned out. The neurologist said it can get better, so my job is to stay positive and keep working the legs as best I can, so I'll just keep on keeping on. The doctors explained why my balance is so difficult in certain situations like when I am standing still vs. when I am walking. It was suggested I get a cane for those occasions where I might be standing around a lot, so I guess that is now on my shopping list. Most of the time I won't have to have it with me. Maybe I'll use my 1 iron, I never could hit that club any way.
So we said our goodbyes to our new friends at the Gift of Life House. It seems like there were so many this time with such overwhelming challenges in front of them. Yet all were so upbeat and positive, it is inspiring just to meet these people. Jeanine and I have turned to a new chapter in this story. We both feel and said the same thing. We no longer are worried or are hearing that little voice in the back of our minds that this disease is going to kill me. We are convinced that it has stopped. After what is now four years of fear, uncertainty, and apprehension, we can finally move on. I will move on a little more slowly than I used to, but it gives me more time to stop, slow down, and look around at all there is around me: all of you out there, friends and family who have supported us, the beauty and magic around us each day--like this incredible storm I am watching right now. Take the time to appreciate it all each day. You never know when it can all be taken away.
So if you are reading this, do me a favor if you haven't done so already. Be an organ donor. It's important. There are people whose lives depend on it, literally. Remember, "Don't take your organs with you when you die, heaven knows we need them here on earth". Love to all, Rick