Todd Murfitt was 35 when he was diagnosed with young onset Parkinson’s disease, and two years later his symptoms had progressed so rapidly he felt like he was walking in quicksand.
- Mr Murfitt was told he had the disease after experiencing a tremor
- He underwent deep brain stimulation [DBS] surgery while he was awake
- His family and friends raised money to help pay for the procedure
Working as a school principal at St John the Baptist Primary School in Plympton, in Adelaide’s south, he noticed a tremor while he was typing.
“I turned up at the neurologist appointment not really knowing what to expect, certainly not expecting any big news.
“It was a bit of a surprise to find out, after a 20-minute consult, that the neurologist was fairly certain I had young onset Parkinson’s.”
Mr Murfitt had heard of actor Michael J. Fox, and knew that he had the same disease, but that was it.
His symptoms included an internal tremor, which meant he could hear a constant vibration or sound, as well as loss of motor control and external physical tremors.
“That moment of being told ‘Todd, I think you’ve got Parkinson’s’ is kind of surreal,” he said.
“I was really at that point [where] it was so far off the radar that it hit me with quite a bit of shock.”
Brain surgery while you’re awake?
Mr Murfitt was able to keep his condition under control with medication. Then, the drugs stopped working.
He learnt the disease had progressed so quickly in two years, that he should consider deep brain stimulation (DBS).
Essentially, brain surgery while awake.
Friends, family and the local community raised more than $40,000 for the procedure that could see his symptoms reduced for decades.
He had to come off medication in preparation and said it was confronting to see how quickly his symptoms had progressed.
A few days before the surgery, Mr Murfitt needed to have his head shaved, so his three brothers and niece had their heads shaved too, in front of all the kids at his school.
“My girls were sitting there and instead of seeing dad sitting there getting his head shaved for surgery, they saw their uncles, they were sitting with their cousins and it was just fun,” Mr Murfitt said.
Doctors used new technology for the first time
Neurologist Rob Wilcox likened DBS to a “pacemaker” for the brain.
DBS is not a cure, but a treatment in which electrodes are placed in the brain and a computer chip is implanted in the chest.
“I’m the sort of navigator and Dr Matt McDonald is the pilot, I do the electrical signals and targeting, Dr McDonald does the surgery, and the third member of the team is the patient,” Dr Wilcox said.
It is a challenge for the patient to be awake, but it means they can feed back information about what is going on in their body.
Patients can tell the neurologist if there are any sensations that help the medical team map exactly where they are in the brain.
The medical team used new technology for the first time that features directional wires, rather than the ring system used in recent years.
This was due to Mr Murfitt’s young age, which means Dr Wilcox will need to monitor and change the electrical fields over a much longer period of time.
The steerable leads allow for more precise control of the shape, range, position and direction of electrical stimulation to different parts of the brain.
“The difference between steerable or directional leads is the ring has been split into three different segments and so electricity can be pushed forwards, or to the side and out, or to the side and in, or both sides.”
The brain shrinks as people age, so the directional wires can also be changed as Mr Murfitt gets older.
“This is the first time we’ve used it in one of our patients, they’re now being used in other states as well.”
The leads also provide information back to the computer chip in his chest, which connects to a Bluetooth device that gives Dr Wilcox updated information about his brain activity.
The future of deep brain stimulation
Dr Wilcox said there were already experimental groups working on the technology that would allow an even more targeted approach to different areas in the brain that produce different symptoms.
Young onset Parkinson’s disease is far rarer than older onset Parkinson’s disease, but the issue is that Parkinson’s itself is very poorly diagnosed.
It is not uncommon for the neurologist to come across people who have had the disease for five or 10 years without being treated.
“We really want to get that diagnosis right because there are good treatment options for Parkinson’s disease and many patients with young onset can be managed with medication alone,” Dr Wilcox said.
Mr Murfitt said he could feel the change while the operation was being performed.
“I was just flabbergasted, because despite the pain of needles and things like that, the overwhelming sense was wow, it feels like a new body, I can’t believe it,” Mr Murfitt said.
‘More quality time with the girls’
While he is still in recovery, he said it had already made a big difference to his symptoms and he was not as reliant on his medication.
“I always felt like I was still a good dad but now I feel like I can really do that, I feel completely unrestricted,” he said.
“I can have so much more quality time with the girls. It’s just great.
“I feel more confident, my brain isn’t having to work so hard to keep up a facade of what I think I should look like.”
The Parkinson’s community has been welcoming, and people have been happy to talk to Mr Murfitt about their experiences.
“There’s been one person who’s gone through DBS that’s been really helpful,” he said.
“What I noticed the whole time was that there was never a flicker of doubt that she might have done the wrong thing, there’s no regret and I can see where that comes from.”