Sharing the lessons along the way…

35%, Clocks and Docs


Again this week, I watched the clock with a baby, her mama and another friend.  The appointment for my 35% total decrease in intrathecal baclofen was at 9 am Tuesday, so I thought for sure something would happen before I left my friend’s house Wednesday afternoon.

I watched the clock all morning wondering when it was going to happen.  It could have even happened before I went over there Wednesday at noon.

It didn’t.  And didn’t last week either.

I still watched the clock when I got home.  Thirty-six hours had passed, and I still couldn’t tell much of a difference in my legs, so I called it a night.

Waking up and walking around my house was not that much different from the day before.  Perhaps I felt a bit stiffer and slower, but it was morning, so who could tell?

Twenty-four to forty-eight hours is how long it is supposed to take to notice a potential effect from either a decrease or an increase in the intrathecal baclofen in the pump.  I looked at the clock all morning, then at 48 hours.  Nothing.

I walked around the house.  I even put my shoes on and walked around the yard.  My left leg was stiffer, and wants to turn inward when I walk, but that was about it.  That wasn’t very different from how it was.  Should I celebrate or keep waiting?

I went on about my day, but most of that was working from home.  I wasn’t watching the clock, but was aware of the time throughout the day.  I started getting some fleeting and painful spasms in my right leg around noon.

It wasn’t until about 4:30  yesterday evening that I noticed something felt funny in my right foot too. I was out in the yard with the boys at the time. Then I had to get ready for a Swain family dinner. And drive there.

I can still drive, but there are some strange feelings going on in my right foot. Both feet are turning inward when I walk without my cane. Hopefully, I can rehabilitate some of that in the days ahead.

After last week’s 25% total decrease in baclofen, I improved my walking speed with the cane since last Thursday’s dog walk and Friday at HEP.  I now use the cane with each step instead of every two.  The pool, the stationary bike, physical therapy exercises and stretching seem to be working for me so far.

The pain has increased in the pump areas of my body as a result of those and my jerkier walk.  Just the same, I am thrilled to see what little I am doing is helping.  I adjusted to that decrease and how to use the cane for it just in time for another decrease in dose.

When my neurologist did his little tests on Monday, it was clear that the left leg was the most affected so far.  That certainly fares well for being able to continue driving.

The next five appointments for dose decreases have been set with the pump doctor after he was satisfied I talked with my neurologist.

They are every Tuesday morning until the end of August.  At that point, I will only have 15% of my original dose and I hope he’ll be ready to schedule surgery.

My primary care doctor is on board for whatever referrals might be needed along the way, but in the meantime, he also to put me on blood pressure medication.  More pain, stress and baclofen’s reduction…

The decreases so far have exacerbated my borderline high blood pressure.  That is really why baclofen has to be reduced slowly because the changes to the body for baclofen withdrawal syndrome can be fatal.

I am not sure I like the clock watching and waiting on Wednesdays anymore after the decreases on Tuesdays.  At some point, it’s got to not matter.  But for next week, just in case, I think I will try Thursday instead.

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Comments on: "35%, Clocks and Docs" (7)

  1. Five Quick Minutes said:

    Good luck to you! It has to be frustrating to deal with this kind of problem. Keep fighting and don’t let it win!

    Christian

  2. what Holly said! 🙂

  3. Holly Smith said:

    Stop clock watching. When you feel something is different in you walking or pain level, that’s when you can look at the clock and see how long it had been since the reduction. You got this girl.

    • Thank you Holly! That is the plan. Duke and I are going to HEP Wednesday and whatever happens there is whatever happens there.

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