Sharing the lessons along the way…

Seriously?! I forgot?!


My morning was a bit chaotic and rushed.  Each day I take Duke to work, I cannot help but laugh as I am getting us ready to get out the door.

I have to pack his bag with snacks and water, figure out which bandana he should wear, pack my bag with snacks and water, and then fix his brother a peanut butter and treat-filled kong.

Once the packing of the bags begins, Duke becomes so excited that he barks and runs around the house trying to hurry me up.  It doesn’t really work, but it usually makes me forget something of mine.

One day, I actually hadn’t put shoes on before leashing him up and letting him out the door to do his happy prance around the yard.duke leash in mouth purple bandana 4-25-12

My goal yesterday morning was to be at HEP with Duke by 9 am.

We were hoping to be home before the thunderstorms started, before we both were overheated and before the latest baclofen dose kicked in.

But I had forgotten all about the last part—the baclofen dose decrease.  Yes, you read that right.

The morning was so busy that I was actually pulling into HEP before I remembered that my decrease had happened at around 1 pm Tuesday.  Then I got Duke out of the car and we started to do our thing, so I forgot again.

I had hoped it would get to this point—where it didn’t matter all that much each Wednesday, where I didn’t hold my breath, and where the world didn’t stop because my baclofen had been dialed down.

After I got home, I noticed a difference in getting up from a lower seated position, more tightness in both legs and more notable clonus.

None of these were really impeding my movement so much, and unless something drastically changed overnight I haven’t noticed yet, I am certain I can work through much of it with the pool, my stationary bike and my exercises.

I wanted to go back to tell you about clonus, as I promised I would in a previous post.  Upper motor neuron lesions typically produce this rapid, repetitive movement back and forth after sudden flexing of the knee or ankle, which is called clonus.

Back in the early years of my illness, there didn’t even need to be a sudden flexing—any movement could cause my legs to shake.  While it could be considered a fascinating thing, I find it as disturbing now as I did years ago.

At the second decrease, I had clonus return in my left leg at the knee and ankle flex points.  I had some ankle clonus even with the pump, but it wasn’t that noticeable.

At each decrease it worsened on the left leg.  At the 40% decrease (last week’s), I noticed it worse in the left leg, and that it had returned in the right leg.

It was this clonus that became so bad six months into the illness that I could no longer press on the gas pedal of the car to drive.

Part of my physical therapy routine is strengthening my quad muscles to attempt to delay this.  It seemed that by strengthening this muscle group, and keeping the others loose riding a bicycle, is what helped me to drive again after getting the intrathecal baclofen pump.

So, I am doing what I deduced worked for me and figure it cannot hurt to try!

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Comments on: "Seriously?! I forgot?!" (8)

  1. Towanda !
    the amazing amazon woman !
    Towanda !
    righter of wrongs – queen beyond compare !
    never heard of her.

    Seriously now, don’t you think that Jessica Tandy
    IS, in fact, the bee charmer ?

    Re: the doggies –
    ain’t unconditional love, Grand ? ! ?

  2. Saw the Dukester’s happy prance. Nicely done – loved the music. Sounds like
    you’ve had a few years to work up a darn good exercise program. I’m picturing you
    looking like Edward G. Robinson in ‘Soylent Green” – pedaling just to keep the lights on. Have you seen it ? So when you are on that cycle – pedaling away – just keep shouting . . .”Soylent Green is People” ! ! !

    • I haven’t seen it, but it is now on the list! I usually do the Tawanda! from Fried Green Tomatoes. That Duke is such an incredible soul mate for me on this journey. Both of my dogs are such an integral part of my manuscript that my editor and I are struggling to make sure their role is clear.

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