I really needed to start off that way. I've realized that people are reading what I share and feeling bad for me and maybe even pitying me, Please don't. I've long had an attitude that you deal with what comes. But there's a little bit behind that.
I'm a dad, husband, friend, and minister. As such, it is my obligation and joy to live in a way that honors and follows Christ. Of course, even I may be a whiny baby and jerk. But, that doesn't reflect Christ. So, I try to do better.
As I said, it is not just my obligation, but my joy to live that way. It makes me happy when I think I get close. A big part of that then is how I deal with the disease and the symptoms. I try to not mind and not whine. So, I share for the purpose of helping people understand this incredibly rare disease that most in the medical profession have only read about. But I also share because it is important to live these challenges not just rightly, but to a degree, transparently.
I know I shared struggles a couple of days ago. Today I want to share some good news. The new dosage of medication does seem to be helping to minimize the impact of some of the more severe episodes. Some of them are lasting maybe half the time I expect and are not anywhere nearly as painful.
And my physical therapist seems to be really learning how to work with me. Each session is a battle between making progress and launching my body into violent and painful spasms. She watches me very closely trying to catch the spasms before they take hold and quiet them. Thursday she managed to thoroughly exhaust me with only very minor spasms and almost no pain. And it seems like we're actually making progress.
One of the strange things about this disease for me is the loss of ability to do certain things. I can't walk up stairs for example. We call it "leg weakness." Although the term is accurate, I can't do things that require strength, but at the same time, it isn't a muscle issue. I still have fairly good muscles mass and tone. This weakness then is actually a control issue. I simply can't figure out how to make my muscles do certain things. I have been unable to clench the muscles on the back of my calves. Through PT, I have found those muscles again.
I won't say anything is solved, because it surely isn't. The disease still seems to have progressed again about 10 days ago. But we seem to be actually learning how to manage it a little bit. This is very good news indeed.