In June, Jonathan shared the news of his surgery with a sense of relief. “I had my Deep Brain Stimulation surgery for Parkinson’s at St George’s and it went smoothly with no complications. I’m slowly recovering my strength and I expect to come home today.” What an incredible start to a new chapter!
Jonathan also revealed a unique twist to his experience: “Since I was the first patient outside North America to have this particular version of the DBS technology, my surgery was filmed! That’s one movie I won’t be watching.” A perfectly understandable sentiment! He expressed his gratitude for the outpouring of support, which he said meant a great deal to him.
The Transition Month: A Period of Patience and Challenge
The month between surgery and the “switch on” of the stimulation can be a test of patience, and Jonathan’s experience highlights this. “I waited a month between the operation on 17 June and the first programming session on 17 July,” he explained.
During this time, his medication regimen was carefully adjusted. “I was put on a schedule of Levodopa every three hours, in total about two-thirds of my previous dose, and I was asked to stick to the schedule consistently.” This was a significant change from his previous self-medicating approach, where he was “optimising to minimise off periods and dyskinesia.”
Jonathan noticed the positive impact of this new consistency, observing that it “was helping my brain to recover and settle down after the operation, and that I needed to just let myself rest.” However, this period also brought considerable difficulties. “This meant that I spent large chunks of my day incapacitated,” he recounted. “I experienced the Parkie symptoms stronger than ever before, and I felt myself chained to the dopamine rollercoaster.” His proactive spirit shone through as he described creating “a calendar to count down the days until programming day.”
Programming: Navigating the Intense Road to Adjustment
The programming phase of DBS is crucial, and as Jonathan put it, “it has been an intense time.” He has now had “three sessions to programme the DBS settings.”
He described experiencing intense emotions and physical changes during this period. “I have experienced amazement and elation when, after a minor adjustment, I feel instantly released from the debilitating Parkie symptoms and a huge smile lights up my face.” These moments of instant relief and joy are what both patients and their medical teams strive for.
However, the journey isn’t without its significant challenges. “I have also been scared by the worst dyskinesia ever when I was writhing around unable to walk, by night after night of insomnia, and thick brain fog that left me unable to think or communicate.” It takes courage to face such profound physical and mental hurdles.
Despite these difficulties, Jonathan’s underlying optimism is clear. “I know the outcome will be wonderful, and I am getting closer each day, but sometimes I veer off track and those detours can be a bit nightmarish.”
He shed light on the complex process his brain is undergoing, explaining that it’s “in a transition from medication to stimulation, and this is a big and confusing change. My brain needs to get used to trusting the electrical stimulation so it can fully rest and sleep.” He also pointed out the fundamental shift “from something cyclical (medication) to something continual (stimulation),” which means that depending on where he is in the dopamine cycle, he’ll “probably be either understimulated or overstimulated.”
Jonathan’s medical team has observed his sensitivity. He recounted his neurologist’s assessment: “I am the most difficult and complex brain she has ever had to programme because I am hyper-sensitive both to medication and to stimulation!” This strongly emphasises the highly individualised nature of DBS treatment.
Lessons Learned So Far:
The lessons he’s learned on this journey, with crucial advice for others:
- DBS is wonderful and life-changing. If your neurologist encourages you to get assessed for it, do so
- DBS is a personalised therapy that requires a neurologist and team who are highly available, compassionate and willing to listen. At the same time it requires the patient to be assertive but also, well… patient, and willing to accept partial progress rather than perfection
- I completely underestimated how exhausted and incapacitated I would be after surgery and after initial programming. I have been unable to work for six weeks and I have had to rely on Monika to look after me far more than I expected. I think I will be able to start working a bit next week
- DBS is an emotionally demanding experience: be kind to yourself — and thank you to the lovely Sarah Webb for reminding me of this!
His story is a powerful testament to the complexities and profound potential of Deep Brain Stimulation. We are incredibly grateful for his openness in sharing such a personal and insightful account.
Jonathan’s journey is an inspiration, and his detailed insights offer invaluable guidance for others in the Parkinson’s community. A growing number of our members have had DBS surgery or are in discussion with their medical team. If you have any questions about DBS, please feel free to reach out.
