Guest Voice: DBS surgery transformed my life with early-onset Parkinson’s

Note: This column describes the author’s own experiences with deep brain stimulation (DBS) for Parkinson’s. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy.

Receiving a diagnosis of Parkinson’s disease at age 45 in March 2010 marked the beginning of a scary and unknown journey for my family and me. Welcome to the world of early-onset Parkinson’s! I now needed to process what felt like a death sentence. This was not part of our plan for our future.

As a mum of two children, ages 9 and 7, I felt so guilty that I didn’t have the energy to be the kind of mum they both deserved. They did not sign up for this. I was also scared that I would pass my condition on to them.

Sadly, we did lose some friends along the way, and other friendships changed. I can’t expect everyone to understand my journey, especially if they haven’t walked my path. Family support is everything.

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Symptoms set in

I noticed my first Parkinson’s symptoms in October 2006, but I thought it was stress, as I had been taking care of my father, who was suffering from a brain tumor. One of the first signs was my daughter asking me to loosen my grip as I held her hand while we crossed the road.

Other symptoms I noticed were dragging my left foot, my left arm not swinging, not being able to squeeze open a clothespin when hanging laundry, difficulty opening a bottle with a kid-safe lid, and a visible tremor in my left hand. At this stage, I wasn’t aware of what these symptoms meant.

I saw a neurologist in March 2007. I was reluctant to start medication until I had a diagnosis, so I spent hours researching different treatments, diets, or exercise classes that could help with my symptoms. I was finally diagnosed three years later.

While doing research after my diagnosis, I found a video of another Parkinson’s patient who had successfully undergone deep brain stimulation (DBS) surgery.

I asked my neurologist about the procedure at every opportunity and was eventually referred to a hospital in Auckland, New Zealand. It was a two-year process with many trips to the city to complete assessments with different specialists and then wait to hear their decision.

DBS surgery can help treat tremor, dyskinesia, and dystonia, but it’s not suitable for all patients. Receiving the call that I had been approved for surgery was very emotional!

My entire life changed

Wednesday, April 17, 2019, was DBS day. I spent the night before the first 5.5-hour operation on the hospital ward. The surgery was at 8:30 a.m.

I was sedated but not asleep, as doctors needed to be able to test for optimum placement of both electrodes throughout the surgery. I remember having eight-plus needles in my head to numb the area. The operation was quite an ordeal, as I was awake the entire time and also needed two CT scans. The halo device attached to my head and locked to the bed was heavier than I expected.

For recovery, I spent one night in the intensive care unit, then another on the ward. I was discharged on Friday. I experienced very little pain and didn’t require any pain relief once I left the hospital. The staples along the suture line extended from ear to ear. Much to my relief, the team didn’t shave my head. Recovery was easier than I anticipated.

I returned to Auckland in June for the second procedure under general anesthesia to place the neurostimulator battery pack (similar to a pacemaker) just under the skin on the left side of my chest. The electrodes were turned on the next day. Results were immediate — I had a noticeable reduction in tremors and required fewer medication tablets. I also experienced far less pain and an increase in energy levels.

I would encourage anyone considering the operation to at least investigate fully so you can make an informed decision.

Not a day goes by that I’m not reminded of how grateful I am for this second chance at life. At the time of the operation, I had given up driving, and working was becoming increasingly difficult. I preferred to stay at home, my safe place.

Since recovering from DBS surgery, I have moved cities, changed my place of employment (sometimes working full time), and resumed driving.

DBS has changed every aspect of my life with Parkinson’s. I recently turned 60, I’m learning to paddleboard, and I enjoy daily long walks. I am more active than I was seven years ago. I’m able to go camping with my family and travel overseas — all things I thought I’d never be able to do again.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.