Life with Parkinson’s
With more than 400 people living with Parkinson’s disease on the Fraser Coast, a group of sufferers and their carers have been asking the question; why do they have to travel to Bundaberg or Brisbane to see a neurologist?
A small group has used this month’s National Parkinson’s Month to raise awareness about the disease and speak out about the problems they face every day.
They say living with Parkinson’s is a “very challenging journey” for both the carer and patient.
“We don’t want sympathy, just empathy,” carer Jaimie de Salis said. Her partner Barry has been accused of being drunk in public because of how the symptoms present and says a sense of humour is essential to maintaining quality of life.
Ms de Salis said most Parkinson’s patients withdrew from society because of public perception and lack of understanding. Among the wide variety of symptoms experienced by people with Parkinson’s was rigidity, loss of dexterity and balance, drooling, memory loss and blood pressure swings, to name just a few.
“We are just hoping we can help people understand and not be critical of someone with Parkinson’s,” Ms de Salis said.
“If someone falls over, don’t immediately think they are drunk or on drugs and lend a helping hand if needed.
“We need people to have compassion and not judge.”
An interesting observation from the group was that they could tell if a sufferer was being treated by a neurologist because the symptoms were better managed.
“We strongly recommend being treated by a neurologist who uses a combination of medication to control symptoms,” Ms de Salis said. “There are people in our support group who don’t see one and you can tell. Some GPs seem to think they can manage the disease but we strongly recommend finding a doctor who will refer them to a neurologist.”
National Parkinson’s Month aims to raise awareness about this devastating condition and helps raise funds for Parkinson’s Queensland for vital research work into the causes and treatments of Parkinson’s disease.
Parkinson’s Queensland CEO Helen Crew said each day thirty people were diagnosed with Parkinson’s.
“It’s not just a disease of the elderly as 20 per cent of people affected are of working age,” she said.
Parkinson’s can affect both males and females and is the second most common neurological condition in Australia; however, Fraser Coast does not have a neurologist to treat residents with the disease.
The Hervey Bay Parkinson’s support group plans to approach their local MPs on the issue this month.