Nick Claydon is waiting for his medication to kick in.
His left arm is a dead weight and muscular cramps in his legs are causing him to limp. The rigidity is painful but he masks his discomfort with dignity and grace. He gets up and moves about, asks for a glass of water, goes to the bathroom. To an outsider he looks like a stroke victim but he isn’t. When his medication finally fires up it will be hard for anyone to pick he has Parkinson’s disease. Right now, though, he is in what he calls off-mode.
‘‘It’s Murphy’s Law isn’t it?’’ says Nick. ‘‘Normally I’d be OK by now. It should have kicked in 20 minutes ago.’’
It’s just past 9am and this is Nick’s second lot of medication for the day. A year ago his brain would have been more receptive but after nine years of treatment his body is slow to respond. He is now on the maximum amount of drugs he can take in a day but there are times, like now, when his brain just won’t participate. All he can do is wait. Once the drugs starting working, he’ll try to fit in as much living as he can – running errands, taking his son for a driving test, loving his family and connecting with his many close friends in the Illawarra’s northern suburbs.
Nick would not normally leave the house in this state, but he has set up this interview in a public place and has been caught out by the unpredictable nature of the disease. It’s not the first time. Once, after a walk to the beach, his body became so rigid he could barely move. Another time, he had to use the rocking motion of the train to help him stand up so he could get off at the right stop. There are times, particularly at night, when he can’t walk and has no movement at all.
‘‘I’m in pain all the time now, unfortunately,’’ he says. ‘‘It’s quite acute actually, but pain killers take the edge off. Most nights I get up at three in the morning and lie on the floor in the lounge to stretch my muscles. Sometimes I’ll go back to sleep, sometimes I won’t.’’
Nick was 43 when he was diagnosed with early-onset Parkinson’s disease. There’s the trembling type and the rigidity type. Nick has rigidity. It’s the same condition as the actor Michael J.Fox, who was diagnosed at the age of 30. There is no predictable path for the disease. No milestones. Each person’s journey is different, that’s why they call it the ‘‘boutique’’ disease.
In the past 18 months, though, Nick’s disease has accelerated to a point where the off times are longer and the on times shorter.
‘‘I can’t stop the symptoms or the progression,’’ Nick says.
‘‘All I can do is manage it as best as possible. I use my medication more affectively now and that means taking it every couple of hours which is a big job.
‘‘But you have to be positive. Mentally, I try not to let things get me down too much, although there’s a lot of frustration that comes with it. In the past 10 years I would have liked to have participated more in my sons’ lives. I’d like to be able to ride a bike with them or go surfing.’’
Nick, now 53, shows some photographs taken around the time of his diagnosis. The extensions to the back of his Austinmer home were finished the year before and there are other happy memories of weekends away camping with his wife Sharon and their three boys.
Nick may now get the chance to reclaim that time lost with the help of a radical surgery called Deep Brain Stimulation.
DBS won’t cure Nick but it will free him of the jerks, the rigidity, the cramps and the pain. It will buy him time to enjoy life, but there’s no way of knowing for how long. It may be two years or 15 and there are no guarantees that it will work. But of the 270-plus operations carried out in Australia since 1994, only two have failed.
On November 28, a Sydney surgeon will bore two holes into Nick’s skull and implant two electrodes into his brain. Nick will be awake during half of the operation so he can help direct doctors to the part of his brain which is dysfunctional. The electrodes will connect up to a battery in his chest, kind of like a pacemaker for the brain. The electrodes will be in place forever and the operation can be done just once.
The surgery is Nick’s last resort and is usually reserved for patients who are no longer responding well to medication. There are risks, including the chance of a stroke or paralysis. But it’s hoped that the neurostimulator will deliver electrical stimulation to targeted areas of Nick’s brain that control movement and block the abnormal nerve signals that make him rigid. ‘‘What’s amazing is that I will be able to hookmyself up to a 240-volt charger and recharge the battery,’’ says Nick.
‘‘Previously people had to undergo another operation to change the battery. You know I feel really lucky to have this opportunity and while it won’t stop the progression of the disease it will alleviate the symptoms hopefully for some years to come. It’s not a miracle cure, and everyone responds differently, but to think that I might be able to return to work or ride a bike again is amazing.’’
The surgery is not available under PBS and Medicare and to pay for Nick’s out-of-pocket expenses his friends have established Our Bit for Nick Inc – to raise money for the surgery and to pay for accommodation for his wife in Sydney while he recovers from the operation in hospital.
Donna Henderson and Linda King are friends of the family and they are organising the fund-raising.
‘‘Nick is a very much loved member of this community and we want to support him through this hard time,’’ says Donna.
‘‘It just brings you to tears sometimes to watch his disease progress. To have it happen to someone so young, to get it in the middle of your life when you’re still establishing yourself and rasing your family is really cruel. Before he had Parkinson’s Nick was a very capable man and to watch this slow decline in him has been dreadful. He is such a patient, brave man and so uncomplaining. The most you’ll ever get from him is: ‘I had a bad day yesterday, but I’m much better today, thanks’.’’
Before Parkinson’s Nick was a headhunter for accountants in a Sydney recruitment company. He worked 60 to 70-hour weeks.
He was on the train when he first noticed a painful pins and needles sensation in his left arm.
‘‘It was an odd feeling. I thought I’d bashed my elbow while digging under my laundry or that I’d strained my arm somehow carrying two heavy briefcases on the train every day,’’ he says.
He had surgery for what doctors believed then was Carpal Tunnel Syndrome but three weeks after the operation his hand was worse.
‘‘I was lifting some bricks in the backyard when I noticed that my hand wasn’t working,’’ he says. ‘‘I was dropping things and I wasn’t able to grip properly.’’
A doctor referred him to Concord Hospital where a neurologist diagnosed him with Parkinson’s disease. After his fourth ‘‘second opinion’’ Nick began to realise that this really was his lot in life.
‘‘It wasn’t that I didn’t accept the diagnosis, it was more like I wanted reassurance that it wasn’t something else,’’ he says.
At first his symptoms were mild and at work he tried to mask them as much as possible.
‘‘You don’t want your colleagues noticing that you’re limping or not moving properly,’’ he says. ‘‘I tried to continue to work, but they were long hours and it was very stressful. In the end I just couldn’t continue and it had an enormous impact on my wife and family.’’
Sharon then became Nick’s carer and the family breadwinner.
‘‘My wife has got an amazing spirt,’’ says Nick. ‘‘She’s so stoic. Most people walk away from this situation, but she’s hung in there even when its been really hard. She’s the one who has kept our family together financially and emotionally. The impact in the last eight months has been difficult for her. As my symptoms get worse we all have to make adjustments. For my wife it’s been a particularly challenging and difficult time. Most people would have had a gutful by now and more than 90per cent of early-onset Parkinson’s sufferers are separated.’’
Parkinson’s disease is a chronic, degenerative neurological disorder that results from the loss of cells from a part of the brain that produces dopamine, a chemical responsible for transmitting signals from the brain that allow for co-ordination of movement. Causes can be genetic and/or environmental and in the past 10 years scientists have identified a single genetic mutation.
One in 350 Australians have Parkinson’s disease and 30 people are diagnosed with the disease each day - an increase of 17per cent over the past six years. It is now Australia’s second most common neurological disease with an estimated cost of $7.6billion for 2011-12.
After his surgery, Nick hopes to be well enough to set up a support group in the northern Illawarra for early-onset Parkinson’s sufferers.
Nick’s friends want to raise $30,000 to help Nick and his family through the surgery.
‘‘Having Parkinson’s has limited my life, but, at the same time, I feel that it’s made our children more empathetic. They are the better for it, in some odd sense,’’ he says.
‘‘We don’t have wealth but we are rich with the support we have from our families and the community. Without the fund-raiser there’s no way I could have ever contemplated having this operation.
‘‘My community has made this possible for me.’’
■The Our Bit For Nick fund-raiser is on Friday, October 5 at the Thirroul Bowling Club. Local musicians The Glamma Rays and Monkey’s Uncle will perform. To donate contact email@example.com.