Tweeted: How a characteristic, yet undiagnosed, Charcot-Marie-Tooth Disease has quickly handicapped my daily living.
Hello my Friends and Blog readers,
This is a follow-up to my Memorial Day email and blog of 05/30/2016 regarding my ongoing medical condition; while I’m at it I’ll also add some other thoughts as I am so often prone to do. If you are a new reader, I apologize for the lengthy and rambling thoughts that I write. As I have written before, to write a simple “Thank You Note” is terrifying and often takes a considerable amount of time; I just hate it as my mind will not cooperate. However, when I sit to write on other topics, especially religious, my mind unleashes a bounty of words.
It has taken longer for a diagnosis (still preliminary, however) than I thought, but I believe my doctors are closing in on an “official name” that will become my label for future medical focus. To date, tests are showing a hereditary / idiopathic peripheral neuropathy with mixed axonal and demyelinating features being coded as, “Hereditary axonal sensorimotor polyneuropathy.” While my disease is not fatal or life threatening, it is incurable. My next step is to undergo genetic testing to identify the particular gene(s) involved.
While my neurologists have not given it an official name, they do say it is in the family of what is called, Charcot-Marie-Tooth Disease (CMT or CMTD). CMTD is a disorder that affects the peripheral nerves that reside outside the brain and spinal cord. It is reported in the medical literature that there are multiple (and still counting) types (gene mutations / “abnormalities”) of CMTD with varying disability characteristics and age of on start.
The uncertainty of my “disease / condition” still lingers despite having seen numerous Neurologists over the past several months. I am not faulting doctors, but it is apparent that further testing or perhaps time will reveal the “true nitty gritty” of my condition. In the mean time I am getting progressively worse; as an example, I can stand from a sitting position only if I am seated in a chair that has arms from which I can push off; once standing, however, I have to hold on to something otherwise I will fall due to balance issues.
Since my first doctor office visit, around the middle of April of this year, when I was seeking an answer for what I was calling, “Heavy / Weighty feet while walking,” I have grown progressively weaker in my lower extremities to the point where I now have a mobile walker and a wheelchair that I use for in home mobility; the mobile walker is light enough, although awkward, to put in the back of our Hyundai. However, the wheelchair is too heavy for either myself or my wife to load. In the not too distant future I will be using a mobile chair and transportation will be by a handicap equipped van. There is no other choice except to become homebound.
About two months ago I voluntarily stopped driving as I did not want to become a hazard to others. Recently I completed a private driving analysis (written, oral and an hour plus road driving evaluation) to determine, (1) if I was capable of driving, and (2) the type of hand controls I would need for driving as I am unable to use my feet to control an accelerator or brake pedal. I passed the course! If you unfortunately have to ever be evaluated be sure to carry your glasses (if you wear them), learn to say the alphabet from “Z” to “A” quickly, be able to pass the written part of the Department of Motor Vehicle (DMV) license test, and other written and mental gymnastics of “hearing and regurgitating memory facts” at a later time in the testing.
At my home, handicap ramps have been installed and other handicap renovations are in progress. The search for a mobile chair and handicap van is overwhelming in terms of cost and suitability. I have learned a lot over the past several months, and I am willing to share what I have learned. Perhaps I’ll start a weekly blog of my journey. I would be happy to hear about yours.
I do not know what the future will hold. I am told by my neurologist that I will not get better, there is no cure, and I can possibly get worse if my condition progressives to my arms. It was suggested that I seek out the latest in “handicap technologies.” Physical Therapy is the only treatment option to keep my muscles strong to prevent ankle and foot injuries, but therapy is exhausting. I have been fitted for leg and ankle braces as an aid to stability, but it will be several weeks before the orthotics will be ready for a final fitting.
Through all the testing I still have a positive attitude most of the time. I am making lifestyle changes to compensate for things that I can no longer do. Reading, Amateur Radio and my internet ministry—The Indwelling Spirit Global Ministry (www.theindwelling.com)—will remain my primary focus as will my current blog (www.spirit.theindwelling.org) that I have of late sporadically published. I sure wished I had paid more attention in my English classes as I now have the need, wishful thinking only, for an “assistant” to bounce ideas off and to proof read and correct my “grammatical and spelling stuff.”
I have given away most of my shop tools as I no longer am able to use them. I do, however, have a 1955 Mercury Monterey 2-Door HT that is ready to paint and reassemble (I was doing an off frame restoration). If you have an interested in restoring an old car, I’ll make you a good deal. My wife will make someone an even better deal. Pictures are available for anyone who has an interest.
For all those who added me to their prayer list I am appreciative. I still, in my opinion, have a few good years left, and it is my goal to be an inspiration to others who may be in need of spiritual uplifting or hope. Stay in touch as I would enjoy hearing from you; however, I will not be sending group email “updates and greetings” as I have in the past.
NOW FOR A MORE SERIOUS POLITICAL AND RELIGIOUS CONVERSATION.
If you do not believe in the Creator God of biblical scriptures and do not possess a Bible in which you read and believe in its truth, go you own way and don’t bother reading the following as it may be in the afterlife, if there is one, that you could plead ignorance to the knowledge of TRUTH you are about to read (in my humble opinion) and perhaps receive a more lenient eternal punishment—Just saying!
America as well as the world is in trouble. The truth is out there, but no one wants to talk about it. What is that truth? It is simply that mankind in his own arrogance and stupidity has denied the existence of the Creator God and His Son, Jesus Christ.
I would argue that Cultural Christianity has been a major force in the “denial of God camp” that I often write about. Think about it. In today’s world, you cannot distinguish between those who call themselves “Christians” and who attend a Church regularly and those who never attend a church of any denomination but yet have “like moral values.” It is understandable that the children of this group, Cultural Christianity, are falling away to “cultural immorality and a me-first mentality” based upon the lifestyle of their parents. This reminds me of the saying, “If the people of this church (name your own group) are going to heaven, HELL is not going to be such a bad place.”
America needs another “Great Religious and Moral Awakening,” but I fear there will not be a return to God until there comes a time of such calamity that man will cry out for deliverance. Even then it may not matter because deniers of God cannot simply pray and return to God unless they are called in repentant faith by the Holy Spirit.
In the coming November election, it will not matter whether Hillary or Donald wins as the pathway to a heretofore unthinkable change in American and her Constitution is about to unfold. I hope you will be prepared with the knowledge that God will provide for those who have believed in His Son (“And there is salvation in no on else; for there is no other name (Jesus Christ) under heaven that has been given among men by which we must be saved,” Acts 4:12, paraphrased by author).
If I’ve offend anyone by being a “deplorable” as Hillary and her followers believe about my biblical morality view, I’m sorry. However, I feel honored and blessed to be reviled by their words. As written, “If you are reviled for the name of Christ, you are blessed, because the Spirit of glory and of God rests on you,” 1 Peter 4:14.
As a Biblical Christian I am obligated—being born of the Spirit in the newness of life—to proclaim the Gospel Message of Jesus Christ by my own free will testifying: “Jesus Christ is the Son of God—born of a virgin, crucified and died on a cross (“He Himself bore our sins in His body on the cross, so that we might die to sin and live to righteousness; for by His wounds you were healed,” 1 Peter 2:24), rose from death and will one day return (at the Rapture in the clouds at His First Coming for His Church—His Bride— and at the Revelation, His Second Coming, at the conclusion of the Great Tribulation for those who were called and remained faithful by believing, confessing, repenting and placing their faith in Jesus Christ and by His Grace have been saved into eternal life.
Please visit my web site and blog, if you have an interest in my calling and would like to know more.
Those are my comments for today. I would be pleased to hear from you.
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