By ELLIANA SALTALAMACCHIA
Radical brain surgery is proving to be a saviour for people with Parkinson’s, with many patients reporting the disappearance of debilitating symptoms.
After undergoing deep brain stimulation (DBS) surgery last month, Parkinson’s sufferer Patrick Cahill said a number of his symptoms had gone, and he estimated the treatment had taken him back about seven to eight years.
“I’m very relaxed in my body, where before I was straight and stiff,” he said. “My facial expression has changed. Before I had this deadpan look and now I can show expression.”
• A Walk in the Park – Australia’s largest event dedicated to Parkinson’s – will be held this Sunday morning, August 27. Details here.
Mr Cahill said he had also been able to significantly reduce his medication to just one and a half tablets a day.
“I was taking five in the morning, three at lunch, three at tea time, and if we went out anywhere, I might take another three,” he said.
“For me, it’s just lifted everything.”
Mr Cahill, 56, was diagnosed with Parkinson’s four years ago, after his wife began to notice changes.
“We were up in Queensland on a holiday, and I’m normally a fast walker but she was walking faster,” he said.
“And around the house I was shuffling, especially at night, and she said, ‘Stop shuffling, you’re moving slower than your dad’.”
But after many visits to doctors and specialists, the father of four said he felt a weight had been lifted when he received his diagnosis.
“I was very happy that I had Parkinson’s, because I actually found out what I had, and that to me was a great relief.”
DBS eases many symptoms
Parkinson’s disease is a progressive neurological condition. The causes are not known, and there is no cure.
Parkinson’s Victoria health team manager Victor McConvey said sufferers experienced motor symptoms that affected movement, but there was also a big non-motor effect.
Common movement symptoms include tremors, stiffness of the face and body, slow movement and balance problems. Non-movement effects extend to tiredness, depression and difficulty speaking or swallowing.
“It’s universal in its effect – it’s almost every aspect of your life, and it also affects every aspect of your family’s life as well,” Mr McConvey said.
“It tests absolute humanity.”
St Vincent’s neurologist Malcolm Horne said that although the treatment was not a cure for Parkinson’s, it had been highly effective in controlling the motor symptoms.
“It doesn’t modify the disease in terms of slowing its progression, but it treats the symptoms very successfully.”
During the procedure, electrodes are inserted into the brain while the patient is awake. These are connected to a neurostimulator, a battery-operated device similar to a heart pacemaker, which is placed in a person’s chest.
The device delivers electrical stimulation to parts of the brain that control movement and block the electrical signals that cause symptoms of Parkinson’s.
Prof Horne said DBS was now being performed on those in their 50s, after once being saved as a last resort. He said there was a window of opportunity at about five years into the disease, where sufferers become good candidates for the treatment.
“We don’t wait until they’re in a parlous condition. We try and introduce it when they’re beginning to enter that stage so they don’t miss too many years.”
DBS turning back the clock
Karyn Spilberg was diagnosed with Parkinson’s 15 years ago when she was 44, and had DBS in 2011 after her symptoms grew increasingly worse.
Six years after surgery, although she may not feel as good as she did immediately after the treatment, she said it continued to ease many of her symptoms.
Before the operation, Ms Spilberg suffered freezing, stiffness and dyskinesia – uncontrollable, involuntary movements.
“I could hardly go out the door, I couldn’t walk the dog; I was freezing all the time,” she said.
“Once I went to the supermarket and I couldn’t take a step. I just stood there frozen and I thought, I’ve had enough.”
Mr McConvey said there was a “stun effect” in the first few weeks postoperatively where patients felt very well, but it took time to see the real impact of the surgery.
“After the first six months we start to get a true measure of how effective the surgery’s been,” he said.
Six years on, Ms Spilberg said the freezing was a thing of the past and her dyskinesia had stopped. Most important was that she had regained her freedom.
“I’m independent now again. I don’t have to rely on anybody,” she said. She can drive and travelled to the US on her own last year.
“I’m just living a normal life.”
DBS patients can have the level of stimulation adjusted over time as required. However, underneath the mask of the surgery, Parkinson’s continues to progress.
It also may not treat all symptoms, or have the same life changing results for everyone.
But Prof Horne said the treatment had improved the quality of life for many people with Parkinson’s by making their medication more reliable.
“If you imagine that you cannot commit to do anything on any day because you don’t know whether your tablets would work, and then someone comes and makes it possible for you to actually make a spot in your diary to do something,” Prof Horne said.
“It’s well worth doing.”
A Walk in the Park
There are 27,000 Victorians living with Parkinson’s disease and 80,000 in Australia, making it the second most common neurological disease in the country after dementia.
Mr McConvey estimates more than 3000 people with Parkinson’s had now undergone DBS in Victoria.
But despite the disease’s prevalence, he said Parkinson’s was still poorly recognised by the community, with the common perception being that it was a disease for the elderly.
He said Parkinson’s Victoria’s A Walk in the Park was the organisation’s key fundraising and awareness-raising activity.
“We continue to battle against raising the profile [of Parkinson’s],” Mr McConvey said.
“Filling Federation Square with three and a half thousand people with Parkinson’s or who have someone with Parkinson’s who they love, is an incredibly impactful, visual experience and an important gesture.”