I have been going through the expected roller coaster ride after having HSCT. I am definitely no worse as in the degeneration has halted. For those that haven’t quite understood. The is the main purpose of HSCT for us people of the Primary Progressive Multiple Sclerosis (PPMS) persuasion. I know a lot of people are looking for some miraculous recovery to take place. Not in my type. People with PPMS can and often do recover noticeably, but usually no where near where they were pre-MS.
People like me try to constantly explain why we are happy, or at least have a positive outlook on our future. It is because we usually have been on forums (Facebook type), which has made us aware of some PPMS’ers who have, after a few years, no longer need a chair/walker/scooter anymore. That is as far as most of us have dared to hope. I could care less if I have a hitch in my giddy-up in a few years. If it is self-sustaining, as in I need no accessory equipment to get around, then I am yelling from the rooftops!
That means, though I am 57, I will give up the Long Term Disability (LTD) and go back to the office every day. Though I am looking forward to retirement, I want it on my terms.. I also feel I still have a lot to give by way of being a mentor, and leading by example for those just getting started in I/T. I was also an ear for those who had been in I/T for some time and were at a crossroads as to how, or where their path should lead next. These two things I miss most about my job, and currently MS has robbed me of that.
That is why I have a positive outlook. My Physical Therapist(PT) has seen improvement since the HSCT procedure. He and I am going through this together as he has never had an MS patient (formerly Progressive) show improvement before. Also, he is use to them just going through the motions. He tells me to try ten, I try more. Try walking to here I go past that spot. He tells me how this is usually not possible, I ignore the statement and say “What’s next?”. I leave there dragging, and hope I didn’t do too much to recover by our next session. That has happened also, though rarely. I pushed too hard and it took a little longer to recover, causing me to cancel my next session. You know what? Life’s a Bitch and then you die. I want to rejoin the Bitchy life part!!!
So now you know how and where I have been since my last update. Never give up, Never give in, Keep Pushing Forward. You will have plenty of time to rest after you Die!!
JUN
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.