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!

Today I start on a new path; or maybe a new branch of the path that I was already on.  Today is the first of 2 days of evaluation and testing designed to determine my eligibility for Deep Brain Stimulation (DBS) surgery.  I have come to the point where I feel that this is the best alternative available.  It's not a cure, but I know a lot of Parkinson's patients who feel that it has transformed their lives.  In fact, one of the people in my support group is doing so well after the surgery that he takes no medication at all!

How does a person get to the point that they feel that having holes drilled in their head and wires run into their brain to deliver small electrical shocks is a good idea? Here's what happens:

They notice a series of odd symptoms which eventually lead to a diagnosis of Parkinson's Disease.  The diagnosis is confirmed by a trial of dopaminergic medication. The positive response to the medication means that Parkinson's is most likely the culprit.  The person becomes a patient. The good news is that the medication is effective and the disease is controlled for several years.

Gradually, the disease progresses.  The patient goes to the neurologist for new or increasing symptoms.  Medications are added, dosages are adjusted, frequency of doses are increased.  Side effects become more and more difficult to balance with medication effectiveness.  The patient starts to experience "off" times, where the medicine seems to stop working, and sometimes when the medications are working, the patient finds that their body is moving on its own, like a marionette being jerked around by invisible strings.  This dyskinesia is preferable to the Parkinson's symptoms, but can still be distressing nonetheless.

The patient knows that things are not going to get any better.  So, when an opportunity is presented for a procedure which will allow a near to normal life with less medication, drilling a couple of holes and running some wires doesn't seem like such a big deal.

This is where I am now, which is why I'm really looking forward to having the surgery done.  First, I have to get through these evaluation tests.  I sure hope I get an "A" 

Walk on the beach anyway.

I've felt hideous for the last few days.  My body temperature fluctuates; I'm always too hot or too cold.  The dyskinesia twists my torso back and forth, and now my lower back is objecting LOUDLY.  l have trouble sleeping and trouble concentrating; last night I lay in bed until after midnight, with my left foot and leg cramping and twisting up all the way to my thigh..  I'm weak and shaky and when I'm "off" my meds,  I have the worst bradykinesia (slow movements) I've ever had.  However...

We went to the beach yesterday anyway.  I figured I wasn't going to be feeling significantly better the next day, and I didn't want to miss the beautiful beach weather.  My husband looked at me like I was crazy when I said that, but we went ahead and packed up the dog and some drinks and stuff and went to the beach.  We had a lovely time, and even though I felt a little worse physically, my soul was peaceful and my mind refreshed.  I love it when I just do what I want, regardless of what PD wants...

Sometimes you have to stop waiting until you feel better, and just go to the beach anyway.

I'm not worried.

My "Dday" (Diagnosis Day) anniversary just passed a couple days ago.  This year, my thoughts are all about DBS.  I'm really not worried about the operation; the risks are few and the payoff is potentially huge.  Why then am I so weepy?  I guess I just resent having to do this at all.  That's not right, though; I should be glad that this option is available now.  I AM glad.  I just wish I didn't have to have a couple of holes drilled in my head in order to feel normal.  Here's a list of "plusses" to DBS surgery:

1.) I can finally say "I can't come to work tomorrow; I'm having brain surgery".  I've always wanted to say that.

2.)  I won't have to go through that scanner thingy at the airport anymore.

3.) I can call myself a "Bionic Woman".  Just don't ask me to run in slow motion.

4.)  I can pretend to be in that episode of Star Trek where Spock's brain is removed and they were making his body work with a remote control device.

Well, all of that is on top of the main advantage; cutting down on medication and feeling normal again. A lot to look forward to!