As Publicity Officer for the Port Macquarie Parkinson’s Support Group, Gregg Faulkner’s own personal experience with Parkinson’s Disease has created a desire to raise awareness of the condition within the community. Help and support is available locally for people with Parkinson’s and their families as Gregg explains…
When was the Port Macquarie Parkinson’s Support Group established, and how much has it grown over the years?
The group’s been in existence for around 15 years and has grown over the years. We now have around 60 members – which represents a small minority of the 300 people we think may have Parkinson’s in the Greater Port Macquarie area. Currently, our President is Stuart Snowden, and his wife Alison is our Secretary.
What’s your involvement with the group?
I joined the group about 9 months ago – I was diagnosed with Parkinson’s 12 months ago. When I joined the group, I became their Publicity Officer – and one of my first tasks has been setting up a website at www.parkinsonspmq.org.au
What is the aim of the group?
One of the big problems with Parkinson’s is that it’s not well understood and there is a general lack of community awareness about the condition. It’s a condition that is progressively degenerative over time, and it puts a big load on carers and family members, so awareness is something we wish to encourage.
Many people know and recognise the hand tremor that some people with Parkinson’s have. Few are aware that the combination of symptoms varies widely and that there is an overlap of symptoms with about 6 other diseases, making diagnosis difficult.
We operate as a local self-contained group under the aegis of Parkinson’s New South Wales which is, in turn, under the umbrella of Parkinson’s Australia.
The group aims to raise awareness and to provide support for those with the condition and also their families and carers. We have our own library of resources for people who’d like more information. We also provide a social environment to help overcome isolation of our fellow people with Parkinson’s and raise money for use by Parkinson’s NSW to maintain a help line and counselling services and to contribute to research.
Please give us some information about Parkinson’s Disease and its associated symptoms …
Parkinson’s Disease is a condition caused by a lack of Dopamine – a chemical found in the brain. Dopamine is an important messenger chemical in controlling nerves that affect muscle movement, so the typical symptoms for Parkinson’s are tremor, rigidity, muscle stiffness, speech problems (because control of the vocal cords is reduced) and problems with peristaltic movement, like swallowing. Over time, people with Parkinson’s disease can have difficulty standing, ‘getting going’ and walking.
As the condition progresses, other symptoms appear, typically diskinesia (sudden violent movement of limbs), poor cognition, memory loss and sometimes Alzheimer’s.
What have been the benefits to you being a member of the group?
I’ve gained a much better understanding of the condition and the treatments available. Knowing there are other people who share a similar situation with you is a help, and being able to talk to others who have, over time, become knowledgeable about the condition is great.
We actually had a disturbing situation recently, where one of our members was put into a care facility for respite care – so his carer could have a break. After a few days, the situation had actually become worse for both of them, as he was not properly cared for, was sedated and had to be admitted to hospital, when he developed pneumonia as a result of the disabling effect of the sedation.
Medical and aged care staff frequently do not realise the importance of timely medication for Parkinson’s and the importance of correct medication type, dosage level and timing. The medication we take typically provides a level of Dopamine in our systems, but it is only temporary, and the levels reduce over time.
It is very important to take the medication at the right time, or the fluctuation in the Dopamine levels can cause severe problems. This highlights the need for increased awareness of Parkinson’s Disease and its treatment options.
Information about problems that occur to our members is passed to Parkinson’s NSW, who advocate to government and health authorities to change inappropriate practices.
How often does the group meet?
We meet on the third Friday of each month at the old Port Macquarie Hospital (in Morton Street). This location may be changing shortly, as The Westport Club has generously offered us their facilities and we’re exploring the possibilities.
What was the event your group held on April 11?
April 11 was World Parkinson’s Day, which is the anniversary of the birthday of Dr James Parkinson – the doctor who originally identified the condition. The purpose of our event was to increase awareness of the condition within the community and to push for further research and support for people with Parkinson’s.
There are treatments that help to reduce and manage the symptoms, but the condition is still progressive.
Something we really need in this area is a community based Specialist Parkinson’s Neurological Educator Nurse. Evelyn Collins is the closest Specialist Parkinson’s Neurological Educator Nurse at the moment, but she is at a hospital clinic based at John Hunter Hospital in Newcastle.
People with Parkinson’s in our area currently have to travel to Newcastle or Sydney for specialist treatment, which can be a big undertaking for those with the condition. There is a neurologist who visits Port Macquarie monthly, but Parkinson’s is only one of the conditions he treats, and he is almost always fully booked, with waiting times in excess of a year.
Anthony Westman from The Westport Club made a formal presentation of Parkinson’s books and media to the Chief Librarian, Jim McGuire. Rob Oakeshott and Terry Sara (representing Leslie Williams’ office) participated at the event and spoke about the need for increased nursing support and facilities in the area.
We are fortunate to have a very active supporter at the Base Hospital in Port Macquarie. Anthony Wall has been working with Evelyn Collins in Newcastle to establish special procedures for Parkinson’s patients when entering the hospital system. This will ensure that all medical staff at the Base Hospital are aware of the special and individual requirements of those with Parkinson’s Disease.
Interview by Jo Atkins.
This story was published in issue 78 of Port Macquarie Focus