Parkinson's controlled: learning to live with electrodes in your head

The day I was told I had young-onset Parkinson's disease, December 7, 1993, was a tough day, a life-changing day, and one I've had to learn to live with. However, June 26, 2007, the date of my deep-brain stimulation surgery, was an even tougher day, but one filled with the hope for an improved life. The years between these dates have been some of the best of my life, even though I have struggled with the burden of Parkinson's.

The surgery for deep-brain stimulation involves the placement of electrodes deep within the brain that are connected by wires under the skin to a stimulator sunk into the upper chest area. Electrical impulses from the stimulator are used to neutralize the Parkinson's symptoms. The surgery takes eight hours, during seven of which I was awake in order to assist the surgeons when they were testing the effectiveness of the placement of the electrodes. The surgery, as previously described in this space (August 16-23, 2007, "You're awake and they're drilling your head"), was a traumatic one, and I could not talk about my experience for several weeks afterwards without breaking down.

Yet it was worth it, and just about everybody I run into comments on my outward appearance and how much better I appear. There is more colour in my face, more expression in my eyes, and my mobility and gait are more fluid and natural. There has also been a drastic reduction in the amount of uncontrolled movements, or dyskinesia, that I exhibited previously. My surgery has also enabled me to make a drastic reduction in the number of medications previously required to help me make it through each day.

Levodopa (brand name Sinemet) is a synthetic substitute for dopamine, which those of us with Parkinson's do not produce in sufficient quantity to allow our nerve impulses to commute from one nerve cell to another. Levodopa is the "gold standard" in the medicinal treatment of Parkinson's. My intake of this medication has only dropped from six pills to four per day. However, I have cut out another 14 prescription medications, known as agonists, that aided the digestion, absorption, and time release of levodopa within my system. All these drugs were combined with, at times, painkillers, sleeping pills, and antidepressants and thrown in a big vat, which was my stomach. I was a prescription pincushion.

That was my way of life, a way of making life bearable for the past 13 years. It offered me a temporary escape from those debilitating "off" periods when small tasks like buttoning a shirt or tying my shoes became a sweaty, frustrating undertaking. During those periods, I became a prisoner in my own body, waiting for my meds to kick in and grant me some parole. The flip side of the intake of 23 medications per day to control my Parkinson's symptoms was a riotous collection of facial tics, head bobbing, and shoulder rolling, all brought on by too much medication.

I now have two hard lumps that protrude from my skull; this is where the surgeons drilled. I do not like to touch them; they are sensitive and itchy. I feel like I have been dehorned. There is a lump over my left ear where the electrodes from both sides of my brain are connected, and a visible cord runs down to the stimulator implanted in my chest. The stimulator, about the size of a small cellphone, is my red badge of courage, and since my surgery it has become less prominent as it has settled into my upper chest area, where I have added some much needed body mass.

I have my own control sensor, which I use to adjust the current on each side of my brain. After three follow-up sessions, we have found a level of stimulation that works for me. I have the ability to turn the device on and off as well as move the power up or down within the electrodes implanted on each side of my brain. I have control of approximately one volt of power, which I can move up or down in increments of one tenth. I don't have enough power to hurt myself, but there is the distinct feeling of a surge when the controls are turned on and a draining sensation when the controls are turned off.

I'm not cured, and although my quality of life has improved dramatically and I am much more even-keeled, I'm not out of the clutches of this disease by any stretch of the imagination. Parkinson's is still an incurable, progressive disease.

In fact, some new symptoms of Parkinson's have surfaced since my operation. I tire more easily now, and I'm usually all played out by the time I get the kids to bed. I have noticed an increase in the amount of saliva I'm producing and must be careful not to drool in public, unless it is appropriate. Another new symptom is the appearance of a tremor in my left arm. It is not continuous but appears every so often for periods of five minutes. My speech has been impacted too, and there are periods of each day when I struggle with making my tongue work. My speech is slurred and I feel like there is sand in my mouth as I attempt to form words. These are all symptoms that I can deal with at present.

The other night my son said to me, "Dad, are you ever going to go back to work full-time?" A valid question, and one that I would have dared not asked myself four months ago. With my increased mobility and my improved overall condition, this is a question that I have been pondering. I definitely feel pangs of guilt when I see my wife stressed out from her work and hear her bemoan the lack of quality time with our children. It is a question that society may ask of me, especially since my surgery was publicly funded.

Yet how many companies are going to hire a mid-50s man with an incurable, degenerative disease? The possibility of returning to the high-pressure corporate world of media sales, where I spent 25 years, is unrealistic, given the time and energy required. I will continue to seek out other options, such as writing and public speaking, in order to provide some support for my family. However, the best support I can provide at present seems to be to my children, who, hopefully, I can still inspire to become what I cannot.

Sometimes I wonder if I'm going to reawaken one day like those poor souls in the movie Awakenings, and then be returned to a shuffling, muttering state. But at least I will have had a taste of a better life, and that is why my motto remains: remember the past, plan for the future, but live for today.

Links: "You're awake and they're drilling your head": Part 1 of Rex Moore's account of deep-brain-stim surgery
Parkinson Society of Canada
Stereotactic and Functional Neurosurgery at UBC