Well, today I had my last Rituximab infusion. This is usually proceeded by Benadryl and it is added again somewhere during the infusion. Benadryl, affects me by making me somewhat listless. I get home and sleep for a few hours, ergo I am awake. This is a milestone for me. I am of the hope it will kick start my recovery. Not that the immune suppression was holding me back. I am talking metaphorically or “In my head”. Wish me luck as we move forward. Since closing the pool, I have returned to Physical Therapy. Once again, I am not going to be overly disappointed (or at least I remember nothing was guaranteed other than remission, which is a big deal) A lot of people don’t understand my type of Primary Progressive Multiple Sclerosis (PPMS) when it hits you, and it hit me about 4 years ago. It came out of nowhere with me. It is not heredity You simply start deteriorating Neurologically. I have developed the tell tale lesions in my brain and upper spine. I have explained it ad nauseam in other places with this blog.
I have lost my balance and proper use of my legs. All neurologically with emphasis on my legs. All prior to my HSCT Procedure.
I am optimistic I will recover some use as time goes by. I am talking about the next year or so. But hey, My brain still works!
Wish me well
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OCT
2016
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.