Sharing the lessons along the way…

Super Sum Up Sunday #4


There was no way I planned on staring at a blank page this week when it came to catching you up! Last week, I would just as soon have forgotten the week.

This week, I was determined to make that different.  I started the week pretty sassy and ended the week with hair to match that sass.

I am proud of myself for many things and want to share those with you.

In my adventures through getting my intrathecal baclofen pump removed, I did learn that we aren’t quite as far along in the dose decreases as we should have been because of some errors in math.  Either way, I am still able to make gains each week with my own physical therapy and targeted exercises.  I am proud of that.  Actually, I am a bit in awe of that.

I spent as much quality time with awesome friends this week as the previous week, but I didn’t do it from such a needy a place.  I am so grateful that it didn’t matter to them either way.  I find myself in awe of my friends’ capacity for acceptance.

The biggest thing I am proud of from this week is my decision to not spend the week clock watching and worrying about what was coming next after the dose decrease on Tuesday.  I didn’t deviate much from my “normal” routine.

Duke and I even ventured to HEP on the day the changes would likely be the most noticeable.  The earth didn’t stop rotating.  Nothing horrible happened and I didn’t need any version of my back up plans that were in place.   I climbed the stairs again there.

Some magical things happened with my dog’s presence with residents at HEP, but none of that relied on how fast I could walk with a cane.

I didn’t spend Monday and Tuesday buying anything in bulk either.  I did consider it, particularly after learning that last week’s decrease was lower than it should have been—5% instead of 10%. photo (2)

There is still tower of toilet paper in my bathroom.  I think I am going to keep that tower until all of this is done because it really does make me feel better.

I do not have an excessive amount of anything else anywhere in the house.   I can still drive and get around in my house without the cane safely.

Water exercises, the stationary bike, specific stretches, and targeted physical therapy exercises are helping to manage the spasticity.  The clonus symptoms (I will explain this in a later post) in my left leg that I noticed the day I was showing residents the exercises I was doing, is now happening in my right leg.

There is likely to be a point where that symptom alone may affect the gains I seem to be able to make to walk with the cane.  Or maybe not.

My cane is now weirdly purple after Duke and I attended an art therapy group at HEP.  My hair no longer shows of gray and even has some amber highlights.  If it looks terrible, I told my friend who did it, “Most people will notice the cane first anyway, so let’s go for it!”

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