Wednesday 8 April 2015



Anne talked some sense into me (and my ego), and the result is that I will be taking my walker to work when I go back.  If I fall, it could result in me getting hurt, and it's very likely that I will end up taking a proverbial step back.  No, thank you.  The best way to prevent me from falling is to have a walker.  It just makes getting around easier, especially when I am tired.  The goal is to get my walking ability to good enough level where a walker is not required.

The ideal outcome of HSCT for MS is to stop disease progression (any healing depends on other factors, and is considered a bonus).  It will take some time to determine if that has happened for me or not.  I had privately (and unrealistically) hoped that I would have improved enough by now (about 5 months post-HSCT) that I would be walking without aid.  But that is not true, and if it were then that would be great, and I would be a statistical outlier.

This post-HSCT recovery roller coaster has been a real crazy ride for me.  Up for a few days, then down for a few days, and repeat.  The emotions of it all are something I didn't anticipate, and so I don't always deal that well with them.  Having my family (immediate and extended) to help talk some sense into me has been necessary and beneficial.  Unfortunately for me, my stubbornness has slowed down my acceptance of their important and correct advice.  But, as the saying goes, better late then never.  The hardest thing for me to accept is how shitty my legs are feeling these days - no worse then they were before HSCT (maybe even slightly better) - but still shitty.  One thing that has (slowly) helped me accept is knowing that I had many lesions (or, as the Radiologist said, a "serious disease burden") on my spinal cord, which caused a lot of trouble with my legs.  HSCT does not heal lesions, its goal is to stop new one's from occurring (by killing MS), and allow your body to do its thing and heal if possible (that's right, healing is a bonus), depending on severity of damage done. the body's ability to heal, and some other things.  So, it seems to me (now) that it is foolish for me to expect immediate relief (and, even relief at any time is not guaranteed).  What I can do is be thankful, keep smiling, keep exercising, keep stretching, and whatever will be, will be.  But a positive mental attitude is paramount.

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Look out Gower Drive, there's a new sheriff in town, and her name is Aly:







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