Sunday 29 November 2015


November 11, 2015 was my one year anniversary of Day 0.  It was definitely a very up-and-down year.  I have received a great deal of emotional support from many people over the last year, and I am very grateful for it.  So thank you.  I have zero regrets about receiving the treatment (only wish I had done it sooner), so a big thank you to all who helped make HSCT for MS a reality for me.

How am I doing, MS-wise?  Overall, just before I got sick a few weeks ago, I was about the same as I was before treatment, which is a good thing.  My annual Neurologist check up in September produced similar results: after my Doctor's battery of tests, his conclusion was that I am about the same as I was in September 2014, with my right hand slightly weaker (I'll take it).  I am definitely worse now, but I attribute that to being sick, and I hope it is temporary.  Here is some info (and a video) about recovery from one of the more HSCT for MS knowledgable people, Mr. George Goss:

"...The biggest difficulty following HSCT treatment is being able to be patient. Realistically, no one should expect improvements before +1 year following transplantation. Improvemts materialize after that and the maximal benefit is seen 2-3 years as described by Dr. Burt in the first 45 seconds of the following video....


Exercising proved very beneficial for me the last 6 months when I was consistent.  Consistency is something that requires improvement on my part, or else use of my legs can quickly fade away.  I have not been consistent this whole month of November because I have been sick with a variety of maladies. This has zapped my energy, my appetite, and my ability to do basically anything.  Constantly lying around caused my back to stiffen up, and the combination of inactivity and a stiff back has not been good for my ability to be mobile.  Thank goodness for my rollator / Cadillac.  I believe the end to my sicknesses is in sight, and I am looking forward to feeling alright again.

Transitioning from M/T/Th/F to full-time M-F work hours was harder than I thought, and made me tired, but I made the switch to 5 days a week in September and haven't looked back (partly because I'm too tired to turn my head - but I believe consistent exercise will help minimize my tiredness).  The hardest thing for me to do is keep a positive attitude no matter what.  I realize that I gotta be patient, and my ability to do things and improve depends almost entirely on me pushing through and capitalizing on each day, but some days I just don't have it.  Those are the days I must channel my inner Rafael Nadal (or even King Robert the Bruce after he saw the spider).  Rafa always fights, and never quits, no matter what - two traits that I need to permanently adopt.  The alternative is not inviting.


My goals for 2016 are to exercise more and have a better attitude.  Talk to you in 6 months.

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Rest in peace Jonah Lomu.

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