Hervey Bay local dedicated to disease awareness
JAIMIE de Salis' heart sank when she noticed something was very wrong with her husband, Barry Vincent.
When their general practitioner said he thought Barry had Parkinson's disease, it didn't come as a shock to Jaimie because she had her suspicions.
"He's had Parkinson's disease for 17 years now," she said.
"He has end stage Parkinson's and Parkinson's dementia and he's now living in care at the Waterford aged care facility."
In the early stages of Barry's diagnosis, Jaimie said his symptoms were managed easily and they felt they didn't need any support.
"Barry could still drive, he could still work in the garden, he could still do everything that he was able to do," she said.
"We did attend the previous support group that was here but I remember there were people there at much more advanced stages than what Barry was," she said.
"Knowing what I know now, I could see a lot of the people probably weren't getting the appropriate medical care they needed.
"And that was very distressing for me and Barry because he looked through a looking glass to the future and thought 'gosh this is what is going to happen to me'."
Jaimie said there was very little information about Parkinson's disease on the Fraser Coast which prompted her to become one the founding coordinators of Hervey Bay Parkinson's Support Group.
She will also host an information booth at Stockland Shopping Centre on April 11 for World Parkinson's Day, where there will be a range of information about Parkinson's disease, caring for someone with Parkinson's disease and the support group.
"We were getting to the stage that we could see a need to have a support group in Hervey Bay and that was the main reason I decided to put my hand up to help," she said.
"There were people there that were really in desperate need of support.
"I really wanted to help these people have a better understanding of this disease so they were able to manage it much more effectively.
"It's the lack of understanding which often leads to poor management of any illness, so to get these people informed and get them to the stage where they can start making choices that will benefit them."
She said obtaining a correct diagnosis wasn't as simple as it sounded.
"In the early stages, the symptoms are much more easily managed and usually people have the disease for several years before they're diagnosed," she said.
"Little symptoms come along and mostly people put it down to the ageing process or they suspect there's something wrong and they go from doctor to doctor trying to get some kind of diagnosis.
"Many GP's are just not equipped to make an accurate diagnosis and many just tell these people they're depressed or it's an ageing process or some other reason, they sort of trivialise it a little.
"But a good GP will often say I suspect there's something going on and here's a referral to a neurologist and then the neurologist takes over from there."
She said the support group had guest speakers such as a podiatrist or dentist who provided advice on symptoms affected by Parkinson's.
The group is free to join, for more information, phone 4124 4104 or email firstname.lastname@example.org.
The information stall will be located near the entrance to Target from 8.30am to 2.30pm.
Volunteers will be on hand to answer any enquiries.
- About 440 people with Parkinson's live on the Fraser Coast.
- More than 40 per cent of people with Parkinson's experience depression and anxiety.
- On average, 30 people are diagnosed with Parkinson's every day in Australia.
- About 4000 people with Parkinson's are under 40 years.
- Fifty two per cent of people with Parkinson's are male.
- There is no cure.