Sharing the lessons along the way…

The sun

Because I was overheated and overly tired at the Homeless Emergency Project Wednesday, I wanted to wait to share how the latest decrease in intrathecal baclofen affected me until today.  I wanted a night of rest in between before I jumped to any conclusions.

I had predicted in the beginning, after a certain point in the reductions, there would only be subtle differences in my mobility and ability to perform certain tasks.  I was mostly right about that, but then I have put forth a lot of effort each week to make up what I have lost.

Just the same, here is what I am noticing the last couple of weeks.

With only 10% of the original dose now, there is more spasticity and clonus.  I am still able to walk short distances out in the world with the cane, but have to be mindful that it takes more energy to do so.

The clonus, or repeated shaking/jerking of a muscle group, is far worse the more fatigued I get.  I am still driving short distances, but need to be mindful of how tired my legs get when I have to drive.

My arms seem to be more uncoordinated and jerky as well, but not to the point I do not have control over them.  I just appear clumsier than usual and the tremor in my right hand requires a bit more concentration with a mouse or touch screen.

My right arm also gets fatigued more quickly using the cane.  There is a certain range of motion in my wrists that I am losing.  I haven’t been able to fully identify it yet to be able to work on it with physical therapy.  It isn’t noticeable to the onlooker.

I had forgotten about the tiredness that comes with Primary Lateral Sclerosis.  I am pretty sure that is another reason why I am so tired lately.  Let me explain.

When the muscles are contracted (as is the case with spastic muscles), they are using more energy by themselves because they aren’t able to release on their own.

It is as if I am flexing my muscles to show you all the time.  If you flex your bicep for long, your arm will probably get tired too. (Go ahead, try it!) Once you release it, your body starts to use less energy.  If the muscle doesn’t release, then it is in need of your energy constantly.

That just means that I have to be more mindful and try to remember how I had managed my energy back in the day.

The degree of the spasticity, lack of coordination, and clonus are not close to how they were when the illness first started and progressed so rapidly.

I couldn’t be more pleased with where the disease process is, regardless of all of the above.  I also couldn’t be more determined to rise above it.

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Comments on: "90% is an A: PLS, Clonus and Spasticity" (4)

  1. ‘Blink rate’ being autonomic –
    how easily we take our breathing for granted.
    makes me think that paying attention to all that
    ‘autonomic’ encompasses
    would be especially important – research-wise.


  2. I never thought about how clonus/spasticity might lead to tiredness. In retrospect, I remember some of that happening even for folks with spinal cord injuries where they couldn’t feel their clonusing (my made up word) muscles.

    I’m a little embarrassed to ask, but does this mean you also burn a noticeable amount of extra calories when your muscles are spasming more?


    • Hi David,
      I think it is a great question! In my experience it does mean that there is additional caloric burn. I am not sure that is true across the board, however. I believe that it changed when the spasticity decreased with treatment and physical therapy for me. I never had difficulty maintaining weight before this illness, but I am really not sure if there is research on upper motor neuron disease and need of additional calories.

      Thanks for reading and for asking a question that makes me realize I haven’t researched every aspect of this disease. A few months ago, I learned that my blink rate (from eye doctor) is affected too.


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