Despite the restrictions that Parkinson’s Disease brings, John Coppens has adapted so that he can still do the things he enjoys.
Coppens was diagnosed with Parkinson’s 12 years ago at the age of 46 while working as a fitter at the steelworks. The first indication of the disease was a sore shoulder, followed by dyskinesia - involuntary movements.
‘‘It’s a hideous disease,’’ Coppens says, sitting in his Corrimal lounge room with wife Anna.
He relies on a walker to get around and carries a pump and tube that works all day to deliver Duodopa intestinal gel which controls the severe involuntary movements of advanced Parkinson’s. Luckily, the Duodopa is being provided as part of a medical trial otherwise, Coppens says, it would cost about $76,000 a year to stay on the medication.
Because the effectiveness of medication used to treat the disease wears off over time, Coppens has been through a myriad of treatments, including Apomorphine which requires 12 injections each day.
Even now, with the intestinal gel, once Coppens turns off the pump at 10pm he can only sleep for about two hours before the movements increase and wake him up.
And the medication has side effects. ‘‘The nausea is the worst ... my appetite’s gone,’’ he says.
Adds Anna: ‘‘I was worried at one stage that he’d lost so much weight that he might have cancer.’’
Getting out of bed in the morning isn’t easy either. He needs to follow routine exercises and it takes at least 30 minutes for the Duodopa gel to kick in.
The next treatment Coppens is waiting to receive is deep brain stimulation, which he hopes will be effective in reducing the severity of symptoms for at least 10 years.
For now though, Coppens is not letting the disease keep him housebound. He races 20 pigeons every week and goes fishing with a friend around Kiama harbour.
He admits he doesn’t bag many prize catches, but the experience of getting out of the house is enough.
‘‘Once I’m out of the house I’m happy,’’ he says. Coppens also takes to the water on a jet ski around Lake Illawarra.
And while keeping active, Coppens is also helping others cope with the disease.
He is the contact person for the Illawarra North Parkinson’s Support Group, which has about 35 members who meet every second Tuesday of the month at the Corrimal Community Centre. This week is Parkinson’s Awareness Week, which is aimed at increasing awareness of the chronic, progressive neurological condition and raising funds for research.
Coppens would like to see a Parkinson’s clinical nurse appointed for the Illawarra.
He says there is one available in the Shoalhaven, but another is desperately needed in the Illawarra as sufferers and their families are often limited in their mobility.
For more details visit www.parkinsonsnsw.org.au.