Sharing the lessons along the way…


photo (11)

Since the plan is to remove the pump once the dose is reduced to nothing, I have to worry about the pain the pump hardware is causing for only another six or seven weeks.  It helps to know that pain is temporary to continue with my plan.

I certainly do not want to dislodge the pump prematurely, but I am less concerned about doing activities that make it hurt.  The pump doc had said back in April that I needed to listen to that pain and not do whatever activity was causing it to hurt, or try to change that activity.

That was, and still is, everything I do regardless of the changes.

My physical therapy plan revolves around minimizing that as much as possible, but since avoiding that pain is impossible, I am tolerating it.  I am not doing anything crazy to dislodge it, but I am not babying it either.

When the pump is jabbing me in the tummy on the stationary bike, I grab it, take a deep breath and keep pedaling.  Yesterday I was texting people to make plans while I was cycling so I would just keep going.

Last week, the pain level was pretty high in the pump areas—front tummy where the pump is and the back area where the catheter goes into my spine.  I chose to not ride my stationary bike one day because of it, and realized there was a trade-off.

Before we started the decreases, I started back on the bike every other day and eventually built up to 25 minutes every day.  Each decrease makes the pedaling harder, which is probably why my torso ends up involved and causes more pain.

The trade-off is in the benefits, and the benefits are worth the effort.  If I do not ride it each day, even for 10 minutes, my muscles are more spastic.  When my legs are more spastic, my steps and gait are less smooth with the cane, which hurts my pump areas too.

I have had to change the amount of time I ride for days I know I am walking around a lot, either at work or elsewhere, or getting in the pool.  My legs also fatigue much faster with each decrease because it takes more effort to move them forward.

The temporary nature of pain definitely changes my perspective of it.  The other stretching exercises I am doing also increase the pain in the pump areas, but again, managing the symptoms of the underlying motor neuron disease is my primary focus.

Exercises both in the water and out are not the only parts of my plan.  I look forward to sharing more of the plan with you in another post or two as we continue on this journey.

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