I have some major news. As you all know, in December of 2012 I was diagnosed with a brain disease called Corticobasal Degeneration (CBD). In January of this year, my regular neurologist told me that something wasn't adding up about my condition. CBD is normally fatal within five to six years of the onset of symptoms. I began noticing symptoms annoying enough to go to a doctor and complain about them ten years ago (2007). Not only am I not dead, I'm still able to walk (with a walker), eat and swallow without a feeding tube, talk (albeit with a slight slur), I am neither paralyzed nor bedridden. So, something was amiss. I was referred to a different Neuro-Muscular Movement Disorder Specialist (it takes 9 -12 months to get an appointment with one, as they are in short supply) and got in to see him November 27th.
Drum roll, please...I do not have CBD. I've got standard Parkinson's Disease.
This is huge. Here, I was expecting to die next year. We'd come to grips with it emotionally and worked with, and around, this expectation for five years. Parkinson's ISN'T fatal. It's annoying as hell, and disabling, but it won't be what eventually kills me in some unknown year in the future. And there are also seventeen different medications and treatment options for managing it. So, off to the labs for more tests, MRIs and blood work to make sure that I don't have any other treatable issues that may be contributing to my symptoms, such as ruling out the possibility that I'd had a stroke. (Most of my symptoms are on my right side.) Once they can get me to where I'm in less pain and not as weak, I'll need to start taking walks and doing physical therapy.
This means that things that I'd stopped doing, like annual mammograms and physicals, I need to resume doing. I figured I'd done my last renewal of my ID, voted in my last election, anything that only happens every four years. It is a big mental adjustment to suddenly have a future. Ten years ago, when the doctor told me that I'd need a hip replacement when I'm 60, I told him that I wasn't going to ever see 60. This is a very weird feeling.
Hugs for Everybody!
