April has come. It is the week after Easter and I have survived. Patt is visiting and when that happens, it means my son gets to drop off his two for the weekend.
I have continued to progress minimally. So much so for the most part, I need people who have not seen me for a minute, to notice where there have been improvements. They are there. I have talked with my group encouragement people. They seem to notice it right off. I do home PT for now, since I am in a rental while we build our final home. Not that we are ready to pass away tomorrow. I just don’t plan to move anymore.
I still like to entertain and MS has, though put a dent in that, has not truly made a measurable difference.We still have our friends coming to visit, spend the night, or even a few days. I have been able to cut down on the number of medications I now take. I look forward to cutting back even further. Not yet, however.
I have talked with a number of others in the group. I have changed from Forearm Canes, to Cross Country Ski Poles. They are more maneuverable and help with balance better. I have stayed in touch with my Autoimmune Disease Warriors. Especially Clinica Ruiz, where I had the procedure performed. They have expanded and are now taking more patients at a time, than the six when I was there. They have also opened another facility in Monterrey, Mexico along with the original location in Puebla, Mexico.
There have been a surge in people who have found out about the HSCT procedure. Unfortunately, it is still more by word of mouth of prior patients, than the medical community. The old oath for physicians, of ” First do no harm”. Big Pharma has taken over that statement. Doctors are now the biggest drug pushers in the world. I say the world, because it is not limited to North America. I have stated in the past, how I have contacted my MD Congressman and NIH, in an attempt to bring this procedure to the mainstream in the US. If left to their own auspices, people will spend $3000 per month or at least their insurance this is ridiculous. That was the cost in 2012 when my Neurologist suggested I take Tecfidera(A drug known even by him, not to be effective for my type of MS) because as he stated “You might as well take something”!
I have been strengthened in my resolve to get this to the forefront of the MS/Autoimmune Disease conversation. Many have been helped, but many others have not. Not everyone can afford to travel to Mexico, or Russia, or the UK, Canada, Germany and even the US. This should be what the Medical community focuses on. Not the size of their kickback from the Pharmaceutical Reps that drop by their office with samples and enticing them, with cash, to push the drugs the represent. So yes, the sick, or physically affected have an uphill battle. I will continue the fight from Florida. I hope you guys, who read this, will become warriors also. Especially for those that have no voice.
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APR
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.