0.001% Chance that I don't have Parkinsons

I hate being a medical anomaly! I have often had the opposite effect of what medical treatments are supposed to have. This is nothing new. Even when I was a kid, medications like anti-histamines that made most people sleepy would keep me up all night. Caffeine, on the other hand, would put me right to sleep.

I recently had the battery to my deep brain stimulation implant removed. (Labelled as a 'pacemaker' on the diagram.)I remember being told before I had the surgery to install the DBS that if I ever wanted to, I could have it removed. I sure didn't think that would ever happen. I was very hopeful that it would stabilize my wild "on and off" swings, and slow down the progress of the disease.

Since there is no medical test to definitively diagnose Parkinson's, and there are other conditions that may cause Parkinsonian symptoms, I asked my neurologist what the odds were that I didn't have PD. I don't remember the exact number, but it was a minuscule percentage.

My brain programmer Renee said that she could see a difference when the implant was turned on, but I really couldn't tell. And as I mentioned a couple of blog entries ago, it started to give me tremors.

I had just the battery removed; the wires are all still in place. Having the wires removed is a much more complex surgery, and the only neurosurgeon in my province qualified to do this surgery is the doctor who put mine in, and he has since then retired. Also, this way if I ever want to try  DBS again I only have to have a battery installed.

Well, since then, I have been gradually weaning myself of Levodopa, the major PD drug that I take. I have actually been doing better with the lower dose. I tend to have dystonia (severe muscle cramps and spasms) and bradykinesia (inability to move) when I am low on Ldopa, and I get dyskinesias (involuntary dancing, swaying movements) when I have too much. Dyskinesia is actually a side effect of Ldopa.

So I asked my neurologist last week if it is possible that I don't have Parkinson's after all. I have asked this question a few times over the years, and he has always been emphatic that I do, even though I have been an enigmatic patient. I don't think that I felt flattered when I found out that my name comes up frequently at their movement disorder staff meetings.

I will keep you posted.

• emphaticem

• emphatic

• emphatic

Walking Test -- Failed!

(Videos are courtesy of the Movement Disorder Clinic in Winnipeg, Manitoba, Canada. Used with permission)

These videos are part of the routine check-ups to test my deep brain stimulator (DBS), surgically implanted in 2008. I have been put through this barrage of tests five or six times. I did the same sets of exercises, repeated four times. My DBS programmer Renee called this battery of tests our office calisthenics. In the office, I had to put pegs into peg boards, press buttons as fast as I could, stamp my feet while slapping my thighs, keep my balance while she came behind me and pulled my shoulders back, and then go out in the hall to do this walking test.

1. Off medications/ stimulation on:

In this first video, I am off my medications but my DBS is turned on.

 

2. Off both:

Then, they turn off my DBS and repeat the whole test again. On the day that these videos were taped, I was not able to do the second battery of tests. This is me giving up. My body is doing its human pretzel interpretation, also known as dystonia. My toes are curled under, and they had to rescue me to keep me from falling. I have had several falls at home during dystonic episodes. One time I broke a bone on the top of my foot. I gave permision for my Xrays from that session to be used in teaching physiotherapy students.

3. On medication, DBS off: 

For the third round, I have taken my pills with carbonated water (to make them take effect faster). This video was taken about twenty minutes after the second one, when I couldn't walk!

4. On both:

For the fourth and final round, they turned my DBS back on.

I have a controller for my DBS that allows me to turn electrical leads on the left and right sides of my brain up and down within the parameters set by the technician at the last appointment, and I can turn the unit off and on. I was sternly warned to never turn the unit off.




Three years ago, I was doing up my pill trays for the week, and my hands were so shaky I couldn't pick up the pills. As a last resort, I turned my DBS unit off. Immediately my hands stopped shaking. I turned it back onand my hands resumed shaking. I turned it back off and left it off. I have turned it on only to test now and then, It has never made my symptoms better. I have been keeping my appointments with my neurologist and my DBS technician every three or four years, and they agree that the DBS is not helping. Next week I have an appointment with a neurosurgeon to discuss having the battery removed.