Illustration by Marley Allen-Ash
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When most people hear the words “brain surgery,” they recoil. I did too.
Deep brain stimulation (DBS) is a neurosurgical procedure in which electrodes are implanted deep inside the brain. These electrodes deliver controlled electrical impulses that help regulate abnormal brain activity. In Parkinson’s disease, that abnormal activity results largely from the loss of dopamine – a neurotransmitter essential for smooth, co-ordinated movements.
But medical definitions only tell part of the story.
One of the most difficult aspects of living with Parkinson’s disease is the gradual erosion of quality of life. Motor symptoms worsen over time. Tremor, rigidity and slowness begin to interfere with daily living. Exercise becomes harder. Driving may no longer feel safe. Speech can soften. Balance and walking are impaired. Parkinson’s is progressive. That knowledge sits quietly in the background of every decision.
First Person: I knew Parkinson’s disease would change our lives, but it was harder than I expected
Although DBS primarily improves motor symptoms, growing evidence shows that its benefits often extend beyond movement. Many individuals experience improvement in non-motor symptoms such as depression, anxiety, pain, fatigue and sleep disturbance. Another important benefit is the ability to reduce Parkinson’s medications. Lower medication requirements frequently mean fewer side effects, including dyskinesia – those involuntary movements that can be as disruptive as the disease itself. For some people, the unpredictable “off” periods – when medication suddenly stops working between doses – are reduced or eliminated.
When I was first diagnosed with Parkinson’s disease at 67, I knew that I would consider DBS. It was not available to me until about four years after my diagnosis, which gave me time to adjust to the idea and gather the courage I sensed I would need. The thought of brain surgery frightened me deeply. But the knowledge that my symptoms would steadily worsen frightened me more.
I was 68 when I began thinking seriously about it. I exercised daily and took pride in the way I cared for my health. Still, I knew that by the time I would be eligible for surgery, I would likely be over 70. DBS is not routinely offered beyond that age. When I raised this concern with my neurologist, he reassured me that my biological age mattered more than the calendar. That gave me real hope.
And yet beneath that hope was fear. Could I really do this? Brain surgery is not a decision one makes lightly. The thought of being awake for part of the procedure – which is often required so surgeons can monitor responses – felt enormous and surreal.
On June 13, 2023, at the age of 72, I underwent DBS surgery at the Ottawa Hospital. After extensive screening, I had been told I was a good candidate. I was terrified right up to the day of surgery that something catastrophic would happen.
It did not.
The operation lasted 10 hours. I was awake for eight of them. It was physically and emotionally demanding. Recovery required patience, followed by nearly six weeks before programming of the device began.
And then, gradually, things improved.
Before DBS, Parkinson’s quietly dictated much of my day. I never knew when a tremor or rigidity would intensify or when medication would fail to perform as expected. That unpredictability was exhausting. I had to plan my activities around dosing schedules.
Not any more.
Since DBS, my motor symptoms are well controlled. Tremors and rigidity no longer dominate my day. But the most meaningful change has been the restoration of predictability. I wake up without immediately assessing whether my body will co-operate. I no longer structure every outing around medication timing. I have regained spontaneity – something many people take for granted.
People living with Parkinson’s know that exercise is the only intervention shown to slow disease progression. Yet motor symptoms can make it difficult to exercise.
Before surgery, that contradiction was deeply frustrating: knowing what would help yet struggling to do it. Today I exercise regularly and confidently, without fear that my symptoms will abruptly interfere.
And there was another benefit I had not anticipated.
Before DBS, I was acutely aware of how my symptoms might be perceived. Even when I felt capable, I worried that visible changes in my movement or facial expression would lead others to make assumptions about my abilities. That constant awareness – that quiet self-monitoring – is a form of stigma. It narrows one’s presence in the world.
DBS has not erased Parkinson’s, and it has not erased stigma entirely. But it has lessened its grip on my daily life. I move more freely now, both physically and emotionally. I am less preoccupied with how I appear and more focused on simply being present.
Perhaps most importantly, DBS has given me the confidence to speak openly about my diagnosis. Earlier in my illness, I guarded that information carefully. I did not want to be defined by it. Now, because I feel stronger and more stable, I can own my story without fear that my symptoms will speak louder than my words.
Deep brain stimulation is not a cure. It is major neurosurgery, and not appropriate for everyone. Careful screening is essential. Expectations must be realistic.
Parkinson’s remains.
But for carefully selected patients, DBS can restore more than movement. It can restore agency. It can restore confidence. It can restore a measure of freedom in a disease defined by gradual loss.
For me, that has made all the difference.
Elizabeth Rigley lives in Ottawa.