FEATURE: Two decades of brave struggle with Parkinson's

KATE NEWTON
Steve Jackson can be a completely different man depending on what time of the day you catch him at.
He could be shuffling around the house like an old man or struggling with the erratic movements that are a side effect of the medication he takes.
Diagnosed with Parkinson's disease in his 30s, Steve is still learning to live with the tremors that are the most obvious indicator of his disease 20 years on. The tremors make it hard for Steve to carry out tasks that involve small refined movements like doing up buttons or shoelaces.
"What I used to be able to do in a matter of minutes takes hours now. It can take all day to cut the lawns. And trying to eat peas on a fork is very interesting," Steve laughed.
He also has stiff and rigid muscles and can be very slow in the mornings. Steve's speech has become soft and slurred and his legs are often restless and can't be kept still.
In 1997 Steve had one of two operations available to people with Parkinson's. The surgery on his brain was very effective but the tremors are almost completely back now.
"It's bloody annoying," Steve said. "This disease has taken a lot away from me and the family."
His wife Mary used to be a nurse which has helped her get through Steve's diagnosis and everyday struggles.
"When it gets tough I click into nurse mode but also have to remember I'm a wife, she said.
Before Parkinson's took hold, Steve loved to play darts but now he can't even hit the board.
Four years ago Steve helped found UPBEAT - a splinter of the Parkinson's Society for sufferers under 55.
Steve said the group meets twice a year to discuss case-notes and laugh about the things they have difficulty with. Any interested members can contact Steve on 878 7909.
Parkinson's awareness has increased through publicity of Muhammad Ali, Michael J Fox, and the Pope's battle with the disease but the curious stares that Steve and his family encounter everyday show that there is still not enough understanding. The symptoms of Parkinson's disease are produced by a a deficiency of dopamine in the brain but there is still not a lot known about the cause of Parkinson's which is frustrating for sufferers such as Steve. Medication has to be taken to replace the missing dopamine but with each new medicine comes the challenge of the side effects. The condition develops very slowly and people are usually diagnosed after noticing a tremor. Others notice that their arms have become clumsy and they are having trouble writing. There are huge amounts of research being undertaken throughout the world and attempts being made to find a cure. Tomorrow is Parkinson's Appeal Day and all proceeds will be used in Hawke's Bay for the benefit of Parkinson's Society members. Only a small portion of the Society's funding comes from government. For the rest the Society relies on applications to trusts, the Lotteries Board and other agencies. The Hawke's Bay division of the Parkinsonism Society looks after the interests of 300 members. Approximately half of the members are Parkinson's sufferers while the rest are carers and supporters. The organisation's main function is providing awareness, information and education on Parkinson's to its members and to the health sector. Each year a guest speaker comes to Hawke's Bay to update members on current research.