Sharing the lessons along the way…

The Ever-Evolving Plan

Choose the path

After a restful but working weekend, it occurs to me that I haven’t yet shared with you what I have in mind after my intrathecal baclofen pump is removed.

At this stage in the process, I am attempting to manage my spasticity and clonus with physical therapy exercises, pool therapy exercises and my stationary bike.  I am tending to my emotional well-being, as well as my nutritional well-being at the same time.

Since my exercises are limited to those that do not make additional pain in my torso area where the pump is implanted, those have been pretty limited.  It is my hope before losing my health coverage that I can get an occupational and physical therapy evaluation once I have healed enough from the surgery.

In spite of the limitations, I am doing pretty well compared to the progression of my illness in the early months and years, ten years ago.  I am pleased with that, but believe it can be even better once I am able to do more.

I am introducing things somewhat methodically because I want to know what helps me the most, and my hope is to introduce one new thing at a time after the surgery as well.  Let me share with you what some of my options are for managing the symptoms of my Primary Lateral Sclerosis besides what I am doing already.

One of the first things I will likely be able to do after surgery is acupuncture, so that may be the next thing I introduce.  I know folks who have found some help from acupuncture with their spasticity, so I am eager to try it to see what happens.

Another alternative health option includes yoga.  I have not been able to do yoga since the first pump was dislodged and this new pump was implanted. Yoga helps stretch muscles so well that I actually reduced the baclofen dose for my first pump because of it.  Massage therapy will also be an option once the surgery areas have healed.

Other options, of course, include oral medications like tizinadine and diazepam.  Oral baclofen is going to be my absolute last resort because of the bladder and sedating side effects I have from it.

I could also do botox injections as I did years ago, right before I tried water therapies.  I have also researched some alternatives that combine traditional acupressure points and electrical stimulation.

What I hope to illustrate here (mostly to myself) is that no matter what this looks like right now, it can look better.  It will look better and feel better.

It is up to me to choose to do whatever it takes to get back to where I am now after the surgery, so that I can then continue to improve upon that.  The options may eventually exhaust themselves and it will look like what it looks like at that point.

I am ok with whatever that might be right this second, but need to make sure I remember what being ok with that feels like as this moves forward.


Comments on: "The Ever-Evolving Plan" (4)

  1. Excellent first choices!!
    Acupuncture seems an ideal treatment. Nice control.
    this would not have been high on the list from bureaucrats.

    looking forward to your blogs as to it’s effectiveness.(good or bad)
    hoping to see it bringing you closer to success –
    as well as to your dreams !


  2. Great post. Love the yoga idea – and it’s free! I’m sure you’ve seen this, but whenever I feel something is unattainable, I think of this guy…


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