Sharing the lessons along the way…

This is my New Baseline!


Still preoccupied with the list of things on my list not marked off, I went on with my morning routine.  I took the boys out for their walk and roll (they walk, I roll in the power chair) and got my iPad ready for the full 30 minutes on the stationary bike.

I would have rather worked or cleaned or something else instead, but remembered I am running out of days to do this before the surgery.  As I got on the bike, started the timer and started pedaling, I noticed something was different.

As I checked my email and went on to play games while I was riding, I noticed something was different.  Wait. What is different?  I kept going because I was at a loss.

About half way through, I realized that the motion of pedaling was smoother.  It wasn’t as much of a challenge to read what was on the screen of the iPad anymore because it wasn’t bobbling with each rotation of the pedals.  I was taking less jerky strides.

As has been the case since the start of the decreases in intrathecal baclofen, I have been able to make up for some of what I lost.  A decrease in the jerkiness is huge!

I know the jerkiness is clonus, and that clonus happens because of severe spasticity of the muscles.  I also know that if the spasticity can be better controlled, it will decrease (as it did with the baclofen).

The stretching, physical therapy exercises, pool and bicycling continue to be helping me to manage the spasticity at this point.

The all over burning is still present, but it is manageable.  It wasn’t as intense by Thursday, and at that point, I started taking my other medication (Neurontin) in slightly higher doses than I was.  It is definitely heat sensitive, as is my other nerve pain related to the pump hardware.

This is the point where I have had a week with absolutely no intrathecal baclofen.  This is the point prior to surgery that will be my baseline.  In fact, I imagine many other posts will be compared to this one in the weeks and months to come.

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Comments on: "This is my New Baseline!" (4)

  1. How many psychic consciousnesses can we fit into one room ?
    Important that you should find out, because
    a whole lot of us are going to be there with you.
    Whether you can see us or not !

  2. Walk & roll! I love it:-) keep dancing!

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