A blog, like a Journal or Diary, is a record of private thoughts with one important exception. At some level there is a hope they will be shared with a few others. I have not posted an entry for more than a year, and even when I was trying to do so with some regularity I did not have more than a handful of readers. I suspect that this latest iteration will fare no better, but I have decided to return to the blogosphere.
Why? Perhaps it is partly because I have more time to do so. Since my last entry I have retired. This retirement was not really on my terms. There have been some serious developments with my health which has made it necessary. I suppose that health condition is one of the primary reasons that I want to start writing again. I would like to leave some sort of record of what I am going through. Since I was diagnosed with a rare neurological disorder I have searched the internet for some sort of record from those who have gone before me. I have failed to find any. It is my hope that writing this will be therapeutic for me and perhaps helpful to some others who walk the same path.
Cortico-basal Degeneration. That is what my neurologist told me he suspected a little more than a year ago. I had never heard of it. Neither has anyone I have shared that phrase with. This was based on CT scans, MRIs, an EMG and a thorough exam of my reflexes to different stimuli. My Nashville neurologist, Dr. Alfred Callahan, told me that there is no definitive test for this condition. The medical professionals would rule out other explanations and watch to see if the symptoms became worse. He sent me for a second opinion to Mayo Clinic in Jacksonville, Florida. There I met a number of specialists, including Dr. Jay VanGerpen, a neurologist who had seen quite a few more cases of CBD than Dr. Callahan. I would see Dr. VanGerpen twice, with a ten week gap between visits. On that first visit he thought I probably did not have CBD, but by the second visit he was coming to the same conclusion as Dr. Callahan. The truth of the situation is that no one can say if I have this until an autopsy is done on my brain post mortem. I am not anxious to have that done!
Those are the essential facts that led to my current circumstance. I have to say that this has been a great test of my faith, but not in the way you might think. I have never asked God why me? I am convinced that God is good. In fact, this whole ordeal has shown me that goodness in scores of ways. So, what sort of test has it been? It has tested my commitment. I have thought often of what God said about Job. "Have you considered my servant, Job?" That book, I believe, is about serving God even when you don't understand what He is doing. That is what I am trying to do. Some days I am more successful than others. I just want to succeed more than I fail.
Wednesday, September 21, 2016
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Glad you're back in the blogosphere. I've always enjoyed your posts, and while I regret the circumstances you're facing, I think what you write will be helpful for others who dace similar circumstances. Blessings, my friend!
ReplyDeleteDavid Williford
Thanks David!
DeleteWelcome back!
ReplyDeleteI've been reading science articles on CBD. It is somewhat confusing, as some literature labels it a "tauopathy" similar to Alzheimers, and others assign it to a Parkinson's-like disease.
You might ask your doctor if there are any trials using aducanumab. Scientists release a study a few weeks ago showing that it clears amyloid plaques away better than any drug yet discovered, and stands a significant chance of being an actual treatment for Alzheimer's. It might also help other tauopathies.
http://arstechnica.com/science/2016/09/results-of-small-alzheimers-drug-study-tantalizing-but-no-breakthrough-yet/
I also gave you a bottle of nicotinamide riboside a few months ago. I'm curious if it helped at all. There are signs it can help Parkinson's-like diseases caused by faulty mitochondria. Another thing worth asking your doctor about.
http://mitochondrialdiseasenews.com/2015/04/30/mechanism-behind-nicotinamide-riboside-translated-future-als-neurodegerative-disease-therapy/
Matt: Thanks for your concern. I have spoken with my neurologist about experimental treatments telling him that I was willing to try just about anything. This led him to get me an appointment with a doctor at Vandy who is the go-to guy for such things. Unfortunately, he is so booked that I won't be able to get in until February. I did take all of the supplement that you gave me, but couldn't really tell any difference. I may well give it another try as I am having more severe symptoms, especially in the last month.
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