Deep Brain Stimulation for Parkinson's- My Remarkable Journey

Written December 2023

April 2023 - My Journal Entry

I am being pulled into a vortex where every movement takes supreme effort, as if I am dragging my body behind me. Sometimes I wonder how long I can go on like this. My whole being is stiff and slow … I must hold on tightly to my walker so that I don’t fall, and I shuffle along with small steps and stooped posture. My fingers are rigid, and my tight lips produce speech that is soft and often unintelligible. The involuntary movements are unrelenting. I’ve had Parkinson’s for over twenty years now, and my future looks dismal.

Concerned about what was fast becoming an alarming perspective I began to explore a treatment option that I had summarily dismissed in earlier years: Deep Brain Stimulation (DBS).tt is a surgical procedure used to treat the debilitating Parkinson’s symptoms such as tremor, stiffness and slowed movement, and is generally used for people whose symptoms cannot be adequately controlled with medication.

As I poured over articles and videos, a glimmer of hope was beginning to flicker for the first time in months. Gradually the idea took hold, and I asked my Parkinson’s specialist to submit a referral to a neurosurgeon at a top hospital in Toronto where DBS has been practiced successfully for years.

Pre-Surgery: Inquiry into My Mind and Body

To consider whether or not I might be a suitable candidate for the surgery, I was required to have an MRI and to participate in a series of assessments that looked at cognition, mental health and response to the Parkinson’s medication “levodopa”.

I was so heavily invested in being approved for the surgery that I worried constantly about being rejected since DBS was – as I saw it- - the only viable option available to me. But at 76 I was at the upper age limit for DBS consideration, and I knew that there was no other treatment that would give me the benefits that I would experience through DBS.

When the call eventually came to offer me a date for the surgery, I was ecstatic, skimming past the fact that I knew it was done with sedation, not general anesthetic. The patient must be awake for the 4-to-5-hour surgery in order to respond to questions and instructions.

I was filled with eager anticipation - even excitement! I was about to undergo what I hoped would be a life-changing event, and for reasons that I still don’t understand I was totally unafraid – then and throughout. I just knew that I would remain calm, breathe through the tough moments and take advantage of sedation when necessary.

Surgery Day: Journey into My Brain

First thing in the morning my neurosurgeon came by to greet me and to mark the spot near my collarbone where he would place the neurostimulator during the second phase of surgery (scheduled for the next day under general anesthetic).

He meant to write “Rt GPI” (doctor’s code) but in his haste he wrote.

R.I.P

Thanks Doc!

Once I was in the OR a specially designed frame was placed on my head which would help immobilize me during surgery, and most of my hairwas shaved in preparation for an incision. I now have hair on one side of my head and I’m bald on the other. Perhaps I should start a trend?

It took a couple of hours to have me ready to undergo the testing and my neurosurgeon kindly agreed to my request that he take a photo of me before he begins. He then proceeded to instruct me to perform certain movements and sounds. For example, I had to open and close my hands at different speeds, and repeat days of the week at different levels of muscle stiffness. Once he had found the optimum level for each he saved it on computer, ready for programming a few weeks after surgery.

Mission accomplished, my neurosurgeon left to update my husband and daughter and assure them that the surgery was successful and that I was in good spirits.

Every single hospital employee I encountered over the entire experience – doctors, nurses and inbetweeners - was kind and helpful. And as for my neurosurgeon I could not have asked for more. Aside from being an expert in the field, he was also warm, friendly and informal.

I had been told that for a few days after the surgery I would experience some symptom relief which occurs because of the activity in the brain during surgery. For a short while I took a trip down memory lane: this was how it felt in the early days of the disease when my symptoms were mild.

Aftermath: The Healing Phase: A Time of Reflection and Hope

Heading to my room after surgery I was filled with overwhelming feelings of wonder and awe. The surgery was successful - and I was on top of the world! Phase Two took place the next day and went smoothly as expected.

I have a vivid recollection of the conversation between my husband and me as we drove home from the hospital. We were dumbstruck … in a state of utter disbelief. The long-awaited surgery was finally over! Not only did I survive without any complications …but the surgery was as successful as it could have been! It felt like a dream!

I have been home for just over a week now, taking it easy with my wonderful husband who walked this journey by my side every step of the way.

It’s hard to believe that just a few months ago I was immobilized both physically and emotionally. I am beyond grateful to have been given this opportunity. While I am realistic about what to expect when the DBS system is programmed, my soul is alive and joyful. This was an experience I will never forget, and I look forward to the future with optimism and hope.

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