Sharing the lessons along the way…

70% Holy Crap!

Roll with it

Remember when you were little and you would put your tiny little feet in one of your parents’ pairs of shoes and try to parade around the house?  The shoes just didn’t work right on your feet because they were big and your feet were little.  Lifting one foot after the other to parade around proudly would become a challenge, perhaps even ending in a trip or a fall.

Beginning sometime between 1:15 and 2:30 yesterday afternoon, it was much like that for me.  The baclofen dose decrease had taken effect and I had someone else’s shoes (and legs).  I did get back to the car with Duke and safely drive home from HEP, but then I went inside my house.

Walking around in the safety of my small place has been easy, with very minor adjustments, so far.  I expected to walk in the door, feel more comfortable in my surroundings, and walk around much like I had before I left.

Except it wasn’t anything like that.

The clonus in my left leg is far worse, which makes extending the leg at the knee and hip to take a step, jerky.  The right leg clonus is also worse, but not to the degree of my left.  With some concentration, and deep breathing, I can make that stepping motion on the right leg appear smoother.

Less than five minutes of freak out time and curse words in a panicked tone later, I remembered I had a choice.  I could freak out about this some more, or I could breathe, rest my legs for a while, and revisit walking around the house.  I didn’t know how much the fatigue of walking from the car to the chair, chair to the bathroom, chair back to the car, etc. was affecting everything.

After somewhat (restlessly) resting in one spot, I was still as stiff, but the jerking was less severe than when I first got home.  I had already noticed it was quite a workout to get myself from the car to the building where the power chair waits for me, but hadn’t considered needing a plan for that interim distance until yesterday.

I had anticipated this level of stiffness and jerkiness weeks ago, but it took it until this 70% decrease to start.  No level of anticipation could have prepared me for how that would feel, however—physically or emotionally.

The clonus symptom remains the most disconcerting to me.  I dislike my leg jumping around without my permission.  Of course, that just gets worse if you try to fight it instead of relaxing into it.

This week so far has been a learning experience—or re-learning experience–about navigating the world with mobility issues.  Fortunately, I do love to learn, and continue to remain relatively intrigued by this process.


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