July is here and the 4th has passed. My wife and son’s family went out yesterday to spend the afternoon and be in place for the Fireworks. Unfortunately they were rained out after the water park. They were at Busch Gardens.
As you know, I rarely open an update, talking about anyone, but my self. In my mind, this is not only a deviation from the norm, but also another step forward.
Not to be repetitive, yet knowing I am and doing so unapologetically. I am still doing quite well. No new or returning MS symptoms. I even am able to turn over and move under the covers better . . . most of the time. There is no longer the heat issue, which use to totally drain me.
I have talked with schoolmates. We all graduated in 1976 through 1979. I don’t know if it is the region (Montgomery County, Maryland) or what, a large number of us, at 50+yrs of age, seem to have contracted some debilitating disease. It also seems to be some type of Autoimmune problem of some sort. I am talking; Lupus, Leukemia, Multiple Sclerosis to name a few. I have not taken a survey, so cannot give a percentage. I have also been contacted by a number of friends and relatives, aware of the procedure I had (HSCT), wanting to get more information about it. I let them know of my Group Forums I frequent and my web page, which should help them get more acquainted with not only the procedure, but research as well.
The best group forum to start with is https://www.facebook.com/groups/149103351840242/. While my webpage, with Archived blogs back to December 2015. carlsmsjourney.com I want to let people know, I have no problem answering questions and pointing people in the right direction to get their questions answered.
I hope these places and the ones received from others will continue to help others.
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JUL
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.