October 2018

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I hope I can recall everything I wrote which disappeared because I didn’t close it right.

I have now been living in the outskirts of Tampa, Florida for the last year plus. We should be moving by mid November into our newly constructed home. It is still on the west coast obviously but in a community of only forty homes, or so. We are using the same contractor who had built our last home, when I was here. The new home is being built to our specifications. I believe our “Retirement Home” should be what we (She) wants.

Patt, until recently had come to grips that I would need medical insurance and she would have to keep working to provide it. That is not acceptable to me. If push came to shove, I would leave, or divorce her she I was not a burden. She should be able to decide how or when she leaves. I should not be an anvil around her neck. Anyone who knows me, knows to me, that is unconscionable.
The VA has denied me Compensation or Pension for my 12 yrs of service. This, though I spent years fixing their radars in Washington state (Ft Lewis)
and Korea, up near that vaunted 38th parallel. They say “You waited too long, so we are not responsible!”. This, though in order to repair the radar systems they said were irreplaceable at the time, you had to radiate yourself.
Fortunately, I was approved for medical benefits, which is what I really wanted anyway.They have sent a personalized Handbook, showing what I am eligible for. We have called the VA together and it looks like they will cover all, but dental.

As far as my MS. It appears as though there has been some weakening physically. I don’t blame the HSCT Procedure, or MS for this. I blame my lack of Physical Therapy (PT). A lot of this is due to a lack of PT on my part. Moving and building a last home, I call our Retirement Home, finally! There is the need of a lot of interaction with the land office and building contractor. We are using the same builder as the last home we had in this area. Not an excuse, just a truism.
I have not had any real regression at all. My cognitive abilities are fine, as in no Brain fog, just the “Old Age” brain. Going into a room and forgetting why you are there!! I tested my IT ability personally. If this is considered a valid test. My mind still appears to be sharp. I do have tingling in my hands, I didn’t have before. My handwriting has gone to hell in a hand basket, especially afternoon to evening. I am aware of and utilize the MS Gym occasionally. I like the MS Gym, but it is not necessarily something I use exclusively.
As soon as we move in, we will start entertaining again for real. We do expect at least one more pre-move visit we are looking forward to. Mark, Michele and my niece Chloe.
Suffice it to say, when we move, I will recommence my Pool Therapy. This is the best way to build my hamstrings, which seems to be my biggest obstacle to balance and mobility. Until next time.

Our Niece and Nephew with Jamsine their daughter

My lovely niece and her daughter Brianna

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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.
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