Deep brain stimulation: Simon's story

10 years after Simon was diagnosed with Parkinson’s, he had deep brain stimulation (DBS), when his medication could no longer manage his symptoms effectively. Here, he shares his story and talks about the highs – and the lows – of having the surgery.

Simon first noticed something was wrong when he developed a tremor in his little finger. “I put it down to the stress of my job, working as a teacher in a school for children with behavioural problems.” He was referred to a neurologist and after a series of assessments, he was told he had Parkinson’s. “It was devastating news and came as a complete shock,” Simon explains. “I had heard of Parkinson’s before, but only in the sense I thought it affected elderly people. At the time, I was only 49.”

“People talk about the first 5 years after being diagnosed as a bit of a honeymoon period. I wouldn’t go that far, but the medication my specialist put me on did work and my symptoms were well managed.” Over time though, the drugs began wearing off quicker. “I began to experience very bad cramps in the morning before my drugs kicked in. Sometimes I’d be out shopping and I would start cramping, which made things very difficult.”

Right from the start, Simon found learning as much as he could about the condition a way of helping him cope. “I’d known about deep brain stimulation for years. But as my medication began to be less effective, it was something I started to talk to my consultant about seriously.” 
 

Pre-op expectations – and post-op realities

In March 2019, Simon had the procedure in Bristol. “I’d seen a couple of programmes on TV, which featured people who had deep brain stimulation. It seemed miraculous and I had assumed the effects would be immediate – in reality, it’s been much more of a journey than I had expected.” 

Simon spent a month recovering from the operation before the DBS system was turned on. He remembers: “When it was eventually programmed, the results seemed brilliant and I had a massive easing of my symptoms.” It has not been plain-sailing though. “I started to notice other symptoms appearing that I had never had before. For example, my balance wasn’t great, and I would stumble when I walked. My speech also became very muddled. It felt like I’d had too much to drink and I couldn’t find the words I needed. It became so much of an effort to talk, I just stopped trying.” 

Before the operation, Simon had no reservations about going ahead with the procedure. “I was very confident and simply saw the procedure as something to improve my symptoms. I never envisaged any problems.” But as Simon began to experience new symptoms, he started to struggle. “It felt like a trade-off – getting rid of some symptoms and replacing it with others. The results of the operation were not what I wanted or hoped for. I did not know whether I would ever get back to where I was and there were points where I felt very low.”

After discussing the new symptoms with his healthcare team, Simon’s pulse generator, the device that transmits electrical currents to the brain, was tweaked. The communication and balance problems Simon was experiencing vastly improved, but he admits he was on a steep learning curve, “I thought the pulse generator would be turned on and that would be it. But there’s been a lot more fine-tuning along the way. I never knew that before, so that’s been very unexpected.”

Having DBS has improved my symptoms hugely. My tremor is now minimal. There’s no cramping. It’s still early days, but generally things are moving forward and progressing well – I am very pleased.

Looking forward

Simon describes himself as a very positive person and believes that positivity is important for people living with Parkinson’s generally. “When I was first diagnosed with Parkinson’s, I had a dream which I revisit often. I was swimming in the sea surrounded by tiny egg-shaped, featureless islands. When I got tired, I clung to an island for a rest. To me, those islands represent my family, my friends, events, places, things to look forward to – sometimes you will go to the same island a lot, only once in a while, or even never, but knowing they are there is important.” 

Despite his normal sunny dispositon, Simon purposefully didn’t plan anything around the operation or in the months afterwards because he wanted to see how everything went. But as his recovery has gone on, he’s beginning to look forward again, with a month’s camping trip to Spain in the diary and his daughter’s wedding at the end of the year.  

As Simon talks, it’s clear that there have been ups and downs since his surgery, but does he have any regrets? “Having DBS has improved my symptoms hugely. My tremor is now minimal. There’s no cramping. It’s still early days, but generally things are moving forward and progressing well – I am very pleased.”

Almost a year on from having DBS and life is undoubtedly different for Simon, but he’s continuing to adapt to his new normal. “After surgery, I read an analogy that stuck with me – imagine being in a horse race and half way through the race, you are given a new horse. Everything’s just a little bit different, but you have to learn to ride the new horse because you are still racing. That’s what having Parkinson’s after the operation has been for me – I’m having to learn how to live with my Parkinson’s again.”