John Watkins wasn’t ready to be an old man.
He was busy. The former deputy premier was head of Alzheimer's NSW and the chair of three boards. He was still active in the Labor Party and even briefly considered running for the federal seat of Bennelong after he was approached by the ALP.
John Watkins has kept his condition a secret since his diagnosis seven years ago. Photo: Janie Barrett
"I was worried people would see the disability not the man," he says. “I hadn’t wanted to talk about it until now because of the embarrassment, the perceived stigma, the feeling that people might think you are no longer useful.”
The diagnosis was slow. Watkins first noticed a minor symptom at an event just before he left politics. It started with a small shake in his hand which he put down to an essential tremor. His grandmother had had an essential tremor, the most common form of tremor but it is not Parkinson’s.
It was three years until his neurologist confirmed Parkinson’s.
“I remember when I was first diagnosed and I wasn’t particularly upset about it, other than the mystery of where it was going. I remember thinking that I was just glad it wasn’t a progressive fatal disease like Alzheimer’s which I was surrounded by at the time.”
John Watkins underwent a seven-hour operation last month, having a pacemaker-like device permanently attached to his brain. Photo: Janie Barrett
Watkins stepped down from Alzheimer's NSW last year. Not through ill health, but because the organisation was reborn as the national body Dementia Australia. He had been at Alzheimer's NSW since quitting state politics in 2008 and very briefly toyed with a return to politics when a byelection was called in Bennelong last year in the wake of the citizenship crisis.
“The party came to me and I hadn’t completely thought it through but then I spoke to Kristina Keneally, who is a very good friend, and when she said she was interested I was really keen and happy to support her,” he says. “I think politics is over for me.”
Until then, Watkins had been managing his Parkinson's with medication. His neurologist had suggested brain surgery – deep brain stimulation – about 18 months earlier but Watkins was not interested.
“Brain surgery? I thought, no thanks, that’s not for me,” Watkins says. But his thinking changed late last year as he found simple things – rolling over in bed or getting into a car – becoming a major struggle.
“I didn’t want to be an old man, I wanted to be around and active for my kids and grandkids and I still wanted to be useful, there was still things I want to do,” he says.
He agreed to undergo deep brain stimulation and his surgeon operated last month. It was a seven-hour operation to attach a pacemaker-like device permanently to his brain.
Deep brain stimulation is used to treat a range of human movement disorders, including tremor, dystonia , Tourette’s syndrome and Parkinson’s disease. Wires are implanted by a neurosurgeon into the brain and then run under the skin to an implanted battery, placed in the chest or abdominal wall.
The rechargeable battery produces a continuous impulse to the brain 24 hours a day to alleviate symptoms. The voltage can be adjusted by the patient with a small handheld device to control tremors.
Watkins says he was a good candidate for the treatment and was told it was likely to be effective. He was fit and healthy, had no illnesses such as diabetes and was not depressed – a side effect for about 20 per cent of people with Parkinson’s and often one of the first symptoms of the disease. “Once I spoke seriously about it with my surgeon, I took the opportunity.”
The surgery has been life changing. The improvements, he says, have been “dramatic”.
“I am not in any pain, I am not on any medication. It is amazing to not have to have a sleep every day, there is no uncontrollable movement in my limbs,” he says. “It really has been incredible. I can roll over in bed and hop in and out of a car and I don’t feel like I have played two games of football all the time.”
He also realises his reluctance to speak about his Parkinson’s was based on his assumptions, not those of others.
“I used to be quite embarrassed about the tremor and would worry people would make judgments. But now I realise it was me judging others, not them judging me. But by talking about it now, I hope I can give some people the confidence to take the step and hopefully gain the benefit I have been blessed with.”
http://www.smh.com.au/nsw/i-was-worried-people-would-see-the-disability-not-the-man-watkins-breaks-silence-on-diagnosis-20180216-p4z0kn.html
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