Parkinson’s Surgery Update 8: Life 5 months after surgery

I realize that it has been awhile since I’ve written an episode of the continuing saga of my life with Parkinson’s disease. I can’t believe it has been almost six months since my Deep Brain Stimulus implant surgery.

To recap: on April 10, 2008 I underwent an eleven hour surgery to implant a deep brain stimulator devise somewhere deep in my brain. A week later I had a second operation to implant a battery under my left collar bone, and tunnel the wires just under my skin to connect the DBS device with the battery. The decision to have this surgery was not made lightly, and there was a thorough screening process to determine my suitability as a candidate. In Manitoba (Canada) we have a world class surgical team to do this operation, but because it is considered to be elective surgery, they are only able to do one or two a month. On my first trip through the screening process, I was deemed to be too emotionally stressed out to undergo brain surgery; which has a high risk of post operative depression. I was sent to the Psych ward, where I attended two group therapy classes to learn to deal with chronic pain. The phrase that I remember hearing frequently was “Live around the corners of the pain.” I’ll let you know then I get that one figured out.

If you are new to my ramblings, I have published a seven part series to chronicle my journey through the surgical experience. I apologize for the parts being out of order – I submitted the first five or six episodes on the same day, and had some technical difficulties. I was also very groggy for a couple of weeks, so my first submission to Triond had to be declined and rewritten when I was of sound mind (or at least what passes for sound mind).

I was hoping that by now I should be reporting that the surgery was a great success, that all of the pain was worth it, and that I am now back to attending church, doing my own housework, and possibly even getting my driver’s license back.

The best change from the DBS implant is that I have very little dyskinesia , (involuntary swaying , which my sister has told me looks like I am in desperate need of a bathroom. Dyskinesia is  a side effect of medication. However, I am having a most difficult time trying to reduce the dosage of the drugs with the worst side effects.

The worst result has been a return to the symptoms that I experienced before I was diagnosed with Parkinson’s – my whole left side is dragging uselessly for several hours every day. The most painful symptom is dystonia – excruciatingly painful muscle cramps which twist my body into a pretzel, making it almost impossible to move at all. Twice now I have been on solitary walks when a fierce dystonic cramp started when I was still a half block from home.

I’ve been a bit of a hermit for the last month or so, mainly because it is painful to walk and I never know when a dystonic attack will show up and I will be stuck somewhere. They have hit me while grocery shopping, causing me to rely on staff (or a friend who is in the store by Divine Coincidence) to pick up the rest of the stuff on my list and ring it through for me. Fortunately we live in a town small enough that most of the grocery stores’ staff knows me.

I am still having a very difficult time reading, since I am still taking the medication that makes it hard to concentrate enough to read. A pleasant surprise has been that God has graciously restored my ability (very important since this computer is my link with the outside world – and also because my handwriting has become illegible even to me). I have also discovered that I am able to read off the computer screen much more easily that out of a book. I am slowly learning that the computer is more than a glorified typewriter, and that Google is amazing! All this I wouldn’t have had time to learn if I had to go to work every day. God faithfully keeps His promise to take bad situations and make good things happen as a result. Right now I am on a character building program. The Bible says in Romans 5:4 that:

“We also rejoice in our sufferings, because we know that suffering produces perseverance;  perseverance, character; and character, hope.  And hope does not disappoint us,”

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.