Sunday, November 11, 2012

Interesting times

The last few days have been very interesting.  If I had any lingering doubts that I have PD, those doubts are gone now.  Wednesday and Thursday I spent a few hours doing evaluation tests at the Movement Disorders Clinic at Stanford Hospital in preparation for Deep Brain Stimulation (DBS) surgery.  Wednesday was fine; even a little fun.  I was taking my medications as usual, and I breezed through the cognition tests in record time; in fact, everyone was kind of surprised at how well I did on them.  I was then recorded on video doing various physical tasks; walking, tapping one foot, then the other, making a fist and then opening the fingers repeatedly, tapping two fingers together, etc.  The usual PD "hokey pokey", though a little more extensive.  All of this resulted in a score of 12,  which the doctor said showed that I was almost normal (lower numbers are better, though I don't know the scale).

Thursday was a different story.  I had been off of Requip (ropinerol)  for almost 24 hours, and off of Stalevo, Zelapar, Amantadine and Sinemet for about 14 hours.  I was a wreck.  I could barely walk because of the cramping in my feet and the shakiness, muscle rigidity and weakness in my legs.  I felt awful; the pain from the muscle tension was almost unbearable sometimes.  Bob had to hold me up on one side while I used a cane on the other side in order to walk.  I was tested and recorded on video again.  This time my score was 33.  So, I have a difference of 21 between medicated vs. unmedicated me.  That is significant enough to justify going ahead with the surgery, according to the neurologist.  The idea is that if a patient responds well enough to the medications, then they will also respond well to the surgery.

I'm still recovering from Thursday; it's surprising how this perturbation of the medication schedule caused ripples that I'm still feeling 3 days later.  All I can say is, thank God for the smart people who developed these medications!  I can only imagine the suffering that Parkinson's patients went through before these meds were available.

I still have one more day of tests, this time with a neuropsychologist.  That will be on Monday.  After that, it's up to the Movement Disorders review board; they will decide whether I get the green light for the surgery or not.  I sure hope they approve me.  I'm ready for the surgery right now, especially since the neurologist says she can guarantee me at least a 50% reduction in medication after the procedure.  I've never heard a doctor give a promise like that before!


Anonymous said...

you described the contrast on/off meds so well, fingers crossed for surgery approval!

Marian said...

Thanks so much, Kaitlyn!

neha verma said...

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Marian said...

Thanks so much, Neha!

About Me

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I'm a lucky lady. I have a wonderful husband of 27 years, a fantastic 25 year old son (I'm so proud of him!) a loving and supportive family, the best friends in the world, a job that I love, and... Parkinson's Disease. I was diagnosed in September 2006. That was a jolt, but I'm learning to deal with it.