I know I am late with my June update. I have only one excuse. Thanks to the Hematopoietic Stem Cell Transplantation (HSCT), I have been able to move on with my life. Sure, as they say, once you have had Multiple Sclerosis (MS), your life has probably been shortened by an unknown number of years.
Well guess what? At 59+ years of age, I don’t care! I am no longer medically progressing. I am still chair/scooter bound, but I am also still somewhat mobile and totally cognitive. I can shower, cook, get in and out of bed myself, clean the house and do laundry.
As a matter of fact, I am living in a rental until the house is built in Florida. I live alone, when visitors are not around. I have the Life Alert System, as a precaution. I’m still waiting for certain visitors and friends, because I love to entertain. My son and family have visited often. He even helps me when I have to pick up a large grocery list. My niece, who lives in east Florida, visits sometimes also. She has two young girls, whom I adore. When she visits, she usually stays the weekend. I have a Mantra. “All you have to do is get here”.
My niece from Charlotte, NC was on a Florida trip with her daughter and Friend. She stopped by and we had a great visit. They swam and ate and relaxed. We talked and laughed and there was love and fun had by all. What I like is, though all are aware of my disability, it is never even a point of discussion.
Jessica, Audra and families
That is why I feel so good. I will always be thankful for finding out about, then following through with the procedure. It has made me feel better about myself again. It has stabilized my condition and allowed me to be me again. Yes, MS has made me legally disabled, due to neurological damage that cannot be repaired. No matter. You would be surprised at what you can do and get use to, when you have to. There were two choices, which for me only one was actually something I could live with. I could be disabled, which means allowing others to do for me and crying and looking for sympathy. Or I could continue to live under my limitations. There was no choice for me. I am thankful for my friends, who know me well enough to know, even with my disabilities, I am still me and not looking for sympathy.
I will continue trying to get the procedure passed in the United States for people who simply can’t afford to have it out-of-country. I am just fortunate. I think I always have been. I won’t go into all the ways, but most of my friend and family know.
Until Next Time,
Your Friendly Neighborhood MS Survivor!!
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JUN
2018
About the Author:
A little about myself: I was born Carl Levon Jones in Conway hospital in 1959 to Hazel Elizabeth Jones. I am the third of four children. My mother never married. This today would be normal but in the old days, it was different. Maybe it was the beginning of the change in view. I was raised by my grandparents from the age of 1 when we moved to Maryland. My mother was still a big part of my life, as she and a few sisters had moved to New York to try to make a living instead of the depressed south. I lived and grew up with my grandparents, brother and sister and cousins until I entered the military at 19 years of age. I spent 12 years in the Army learning to be an electronics technician, just to have computers take over the industry. I, therefore, had to relearn electronics with computers being the main focus. No, I am not talking Windows and Microsoft, but Fortran and different flavors of UNIX creating GUIs. I rose through the IT Field from the bottom, to be a Manager at different DOD Contractors. I was married to my wife, Patt in 1981. We have been together ever since, 38yrs. We had one son, Carl Levon Jones II the following year while still serving in the military. I am a man who believes strongly in family and relatives. I am as close to Patt’s family as I am to my own. Closer in some cases. Unfortunately, my rise in IT was interrupted when I contracted the Autoimmune Disease, Multiple Sclerosis in 2012, diagnosed in 2013. I had to leave work in late 2014. I have been dealing with the nerve damage(Neurological) the disease caused. I went to Clinica Ruiz in Puebla, Mexico for a procedure called Hematopoietic Stem Cell Transplantation (HSCT). It is not offered for my type of MS PPMS in the United States. A battle we have been fighting for some time now. This Blog is about my; MS Journey, my thoughts (Poetry) throughout the years, my experiences and my friends and family (Photo Gallery). Hopefully, this Blog will help at least one person in their decision to conquer the MS Beast, and help to get this procedure available in the United States and covered by the Insurance we pay so much for.