[DAY +41] Yesterday was a day filled with rest, stretching. and t.v. Today my physiotherapist came and I did many exercises. My right arm and leg are definitely weaker than my left side (MS effects), and all my muscles need improved flexibility. After I move back home, he said a good thing for me to do would be yoga - be it a class somewhere or a dvd at home - since it involves breathing, stretching, holding positions, and balance. He also recommended a stationary bike / pedal machine to provide strengthening and range of motion capability for my legs. I checked, and quality pedal machines go for <$200 on Amazon. Should be here in 2 weeks or less.
I am a member of a very informative FaceBook Forum about HSCT. Somebody asked about post-HSCT improvements. Although there is no guarantee of improvement for any MS patient who undergoes HSCT, one of the more knowledgeable people in the forum, George Goss (who had HSCT 5 years ago for his Secondary Progressive MS and is currently doing very well), had this piece of good information to share on the topic of post-HSCT improvement:
"The three biggest factors that are predictive of post-transplantation outcome probability are #1) Morphology (beneficial outcome skewed towards relapsing cases vs progressive MS at time of transplantation), #2) EDSS (beneficial outcome skewed toward people that are ambulatory with lower EDSS at time of transplantation) and #3) Longevity (beneficial outcome skewed toward those hat have a shorter duration between disease onset and transplantation). Additionally, symptomatic improvements do not typically materialize immediately following HSCT. Instead post-HSCT symptomatic improvements most often follow a temporal pattern that goes like this. . . . . People "notice" improvements at +12 months following HSCT, At +18 months the improvements become "obvious," and at +24 months the improvements become most "substantial." Dr. Burt describes this phenomenon in the first 45 seconds of the following video. . .https://www.youtube.com/watch?v=msYTOSo4jZo&feature=channel.
Cerebellar (dys)function(s) are usually the first/most complete symptoms to improve.Cerebellar functions are most non-motor functions (does not include muscle control) and includes things such as temperature (in)tolerance, visual disturbances, dysphagia (swallowing), dysarthria (speech), ataxia/vertigo, parasthesia, etc."
Thanks, George.
My strength of voice, heat intolerance, and overall fatigue level have already shown improvement (based on the above, I think these are 'cerebellar functions'). Other symptoms, like leg muscle strength and spasticity affecting my ability to walk will need more time and effort in order to improve. At the time I underwent HSCT I had primary progressive MS, my EDSS score was 5.5 (0 - 10 scale), and I underwent the procedure 5 1/2 years after I was diagnosed.
We will see how much improvement I make. Working hard for improvements will be required.
Hey Aaron, I just had a chance to catch up on your December posts. I love reading your updates and I'm humbled by your strength and perseverance. Sending positive thoughts your way and wishing you continued improvement in the days and months ahead.
ReplyDeleteThanks Porter. Merry Christmas.
Delete