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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 ...
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It has been a few months since my last update. There has been no real Neurological improvement since December. I can definitely state I am stronger, due to Physical Therapy. We say, “If I am not crawling out afterwards, either he, or me, didn’t do our job!”
I am beginning to get a handle on the actual neurological damage that has occurred. Some, I am still not sure of the possible recovery of some areas. I know I have to be ...
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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 ...
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I have been reluctant to add an update due to very little change physically. In talking with friends and family, they seem to think that is not true. I have made small improvements they notice, not seeing me every day, that I simply don’t notice.
Also there have been a number of visitors come to stay with us for a few days each. My wife and I are known for our hospitality and comfort of friends. It was brought up, I ...
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http://www.telegraph.co.uk/science/2016/06/09/multiple-sclerosis-patients-walking-working-and-skiing-after-gro/
My Lifelong Sister friend found this article.
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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 ...
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These are the words of my Learned Friend and fellow MS recoverer. He has been one of the leading voices in our striving to get the word out about HSCT and to let people know the pitfalls and life altering aspects of the procedure. I felt I would be remiss if I didn’t add this, as my Blog seems to be getting read by more people of late.
The major thing about HSCT is IT IS A REAL MEDICAL PROCEDURE. You ...
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Good Day Folks,
Today was my second Rituximab Infusion. I had no problem with the infusion itself. My energy level afterwards was nil however. The wife, who took me and brought me home, was worried because I was tired and slept a lot.
I felt fine otherwise. I feel fine now 12hrs later. But ...
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Good Morning My Friends,
There have been no miraculous improvements or unexplained back slides. This is the time for bearing down and sticking with it. When I was in the military, this is the time during those 20 mile marches, or 5 mile morning runs, when you kind of just space out and though you’re putting one foot in front of the other, you’re somewhere else.
My point is, this is the part where you must get ...
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13 Feb 2016
I received a letter from my insurance company today. As expected, my follow-up treatment has been denied. My Dr. is still going to resubmit the request with a letter of appeal. He is hopeful they will at least cover; the time, room, nurse, and maybe medical equipment. My Insurance advocate wants me to have the appeal resubmitted so the insurance company is forced to re-conference and detail the denial.. I do not expect anything different as far as ...
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