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.

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DBS - End of the Saga

DBS (Deep Brain Stimulation) has had an almost miraculous effect on many people with Parkinson's disease. I am not one of them.

I had a DBS unit surgically implanted April, 2008. It was an ordeal not for the faint of heart. The surgery was done in two stages. First, the wires were buried in the subthalamic nucleus (STN) deep down into my brain stem through two dime sized holes in the top of my skull.with the wires tunneled across my head, behind my left ear.This was an eleven hour surgery for which I had to be awake so that I could tell the doctors which part of the body was tingling with electrical current. They also had to examine my eyes every now and again, which would be rather difficult if I were asleep.

One week after the first surgery, I was back for part two: the battery implant. There is no room in the brain for this gizmo,so the battery needs to be implanted in the chest. I got one of the old style batteries that would need to be replaced surgically when it runs low.. I was told that it might last for two years. Nine years later it was hardly used.

The goal of DBS surgery for me was to even out my daily on/off cycle. I had high hopes for a good outcome. Turned out to have the opposite effect on me. My dystonia (the excruciating muscle cramps and human pretzel syndrome) got worse, the dyskinesia (involuntary dancing), and the bradykinesia (where every movement feels like trying to walk through a cloud of gelatin. Renee -my first programmer - called it 'wonky'.) all got worse and lasted longer. Fortunately my 'on' hours also improved. When I was on, I felt almost normal. A lot of people only ever saw me in this state, because I tried to plan my day around my on times. Even my family doctor rarely saw me in the other stages. I brought my laptop to an appointment once and showed him video of the other stages. He was quite surprised, especially that I was cycling through all of these states every day.

Nine years ago, I threatened Renee that if the DBS made me worse instead of better I was going to move in with her. Her husband was the surgeon who put the damn thing in my head. Unfortunately, they have both retired now. I met them at a Parkinsons convention a couple of years ago. I told Renee that I had turned my DBS off, and she was rather horrified. She asked if Steve (her replacement) knew about this. I have been too afraid to ask if she confronted him to ask why he would let me turn it off.

While writing this update, I noticed that my 5th chapter of the saga for some reason had never been posted on this  blog, so I just added it and it may be out of order. Here is the missing link.

The DBS has never made a significant improvement in my Parkinson's symptoms . About three years ago I was filling my pill trays for the week, and my hands were shaking so much that it was difficult to pick up the pills. Turning my DBS up and down made no difference, so I tried turning it off (something Renee had told me to never do!) and the tremors stopped immediately. When I turned it back on  -- and the tremors came back. I tried turning it on and off a few more times,with the same results each time.

Since then, I have kept the unit turned off except to experiment now and then to see if it would do any good for extreme symptoms and for on times to see if they would last longer. It didn't seem to make any difference.

So now I decided it was time to call it quits. Last week I had the battery removed. Nine years ago, the battery implant surgery was a difficult ordeal, especially for the first week after the surgery. I was hoping that the surgery to have it removed would\be easier to recover from. No such luck. I have not been sleeping well, so all day I have been falling asleep and having extreme symptoms that are lasting for hours.

The surgeon left the leads in my brain and the wires tunneled down to my chest. He secured the ends in the chest cavity in case I ever want it hooked back up again. Now I am feeling the wire tubes moving around. I wonder if I made the right decision.

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.