I have had a busy year this year. I have moved back to Florida, having lived here multiple times in the last 20 years. My Wife Patt did not want to leave the last time Feb 2006. It was a career move for me and she relented, unquestionably. We are back now, or at least I am. She will be back soon enough!
A lot of stuff to do to settle in. We are currently renting, but looking. We may buy inventory, but the wife wants to buy an acre or two and build exactly what we want. I think that is a good idea.
As Far as my MS (PPMS) I just responded to Clinica Ruiz’s new survey. I am also looking forward to two things. I have had no major improvements, but have not degenerated one iota either.
One, I plan to start utilizing a true MS Physical Therapist. His name is Trevor Wicken. He, along with his wife Misty, have started a group called MS Gym. Trevor seems quite genuine and knowledgeable. He says this (The online portion) was an experiment they discussed and decided to try. He has been doing MS Physical Therapy for years and wanted to reach a larger group of individuals. He realizes there are many PT’s but not many who are trained and working with MS patients pretty exclusively. Maybe I should say people with Neurological damage. I would love to post one of his messages, or Therapy lessons, but that would be wrong as it does cost to get access, or join his little MS Gym Fraternity. That is my phrase, not his. He uses Tribe and Family. He seems so knowledgeable that I am really feeling it. Those of you who have MS, whether in a chair, a hitch in your giddyup, or somewhere in between.
Two, I am looking forward to the meeting in December of the Alumni of Clinica Ruiz. I am not sure what the itinerary is, though it is published. There will be a number of the doctors there from the Clinic and a number of the Alumni. I am going to make sure my mates are all aware of this. and hope to see some of them there!.
OCT
2017
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.