If not for the PA Hospital’s neurology team and deep brain stimulation surgery, Brisbane father Jay O’Callaghan would be living a life crippled by pain.
Now he’s a published author, planning his second book, and living a life he didn’t think possible only years earlier when Parkinson’s disease had impacted nearly every aspect of his life.
Already dealing with the symptoms and effects of Lyme disease, Jay was diagnosed with early onset Parkinson’s Disease in 2017 at just 34 years of age. He explained the first signs of the condition was a consistent twitch in his finger.
“I kept getting a twitching in my right index finger, and so the specialist said that might be Parkinson's, but the interesting thing was that, before that I was having a lot of digestive issues, but Lyme disease also causes a lot of digestive issues,” he said.
“So, there may have been an association between the two, because one specialist said, regardless of whether you got Parkinson's early or late, whether Lyme disease had caused the progression of the disease to come out, I would have ended up with Parkinson's disease as an old man anyway.”
Parkinson’s affects each patient in different ways, for Jay, it wracked his whole body in a level of pain that is hard to comprehend.
“I was in severe pain. Because basically I had no feedback loop back to the brain. My muscles were constantly contracting in my whole body. It was like when you get a foot cramp or a cramp in your calf muscle. Imagine that all over your body, 24 hours a day, seven days a week for two years. Can you imagine that?
“Pain like you would not believe. No human should go through that. But I went through it and I'm surprised I didn't die from stress.”
Deep brain stimulation surgery involves the placing of small electrodes in the brain which connect to incredibly thin wires in the body to help rewire the brain’s pathways and neural connections that the disease has affected.
Under the care of PA Hospital neurologist Dr Alex Lehn, Jay has had two surgeries, both in 2023, performed by neurosurgeon Associate Professor Sarah Olson. The difference the procedure has made for the father of two has been monumental.
“The first one was October 17th, 2023. The second operation was on the 28th of October 2023. Because they had to adjust the lead on the left side of the brain. They weren't happy with it, so they had to go back in and just move it a little bit,” he explained.
“After six weeks of physiotherapy, it made a dramatic change. I went from being in a hospital bed but couldn't move in pain to no more pain. And after six weeks, I walked out of the hospital,” he said.
“I asked Dr. Lehn for some videos. I've got footage of me walking after the surgery. It had a dramatic effect on my ability to walk and function. A dramatic effect.”
Jay published a children’s book about teaching his two boys, both aged under 10, about how to grow their own vegetables called Watch Things Grow within a year of his surgeries. With their encouragement and thanks to the support of his partner, he is planning a young adult fiction novel.
Jay goes to the gym weekly to reinforce the connections in his brain the DBS reestablished, which helps ensure his progress doesn’t stall or go south.
He remains incredibly grateful to the specialists at the PA Hospital and their teams for the care provided to him and what that’s meant for his family.
“It changes your life. But it's helped me realise one thing. It's helped me appreciate life, and every minute you have, nobody could get the perspective that I've got, you cannot buy that sort of thing. I cherish every moment.”
Thanks to our incredible supporters,the PA Research Foundation has supported research and state of the art equipment by PA Hospital's neurosurgery clinicians and department for several years. This support has included funding for the Gamma Knife which is currently being used to research and treat Parkinson's tremor, funding for neurologist Dr Alex Lehn, as well as equipment for neurosurgeon Associate Professor Sarah Olson who performed Jay's surgeries.
You can check out Jay’s book Watch Things Grow via his website https://jaylocallaghan.com/
You can support patients like Jay to have imporved healthoutcomes by making the Foundation your place to give here.
