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Thursday, September 10, 2015

Parkinson's support group helping sufferers and carers prepare for what may be

Posted yesterday at 10:40pm
Every fortnight a group of people get together in a small room at the northern integrated care service building in Launceston and they all have one thing in common — Parkinson's disease.
Some people in the support group live with the disease, others have family members or friends living with it, and the support group offers a place to share ideas and thoughts. 
Diana Newell has been going to the fortnightly sessions for about seven years after her husband was diagnosed with the disease 14 years ago.

"I'm just a carer, but I might be able to give them a little hint on what I've tried and it's worked, and what I've tried and it hasn't worked," Ms Newell said.
"The reason I came along originally was because I didn't know enough about Parkinson's.
"You can come along and speak to some of the people who have it and find out some information."
Ms Newell was attending the meeting alone and now feels she can offer more support and advice to others as well as using it for her own knowledge.

Support for those in the early stages of Parkinson's

The group is mostly made up of people who have been living with the disease for a while, with only a small number of young people in the earlier stages of the disease. 
"The [young] people are actually still working and sometimes they think 'oh, there's nothing there for me, I'm still young, I don't really need that support' and they just don't come along," Ms Newell said.

"Sometimes you find the early onset ones maybe find it a little intimidating with older people, sixties and seventies who have the disease, and they are a little nervous and frightened of what they might see and think."
The one exception in the room is 41-year-old Hayley Milne from Launceston.
She was diagnosed five-weeks-ago and she has a lot of questions.
"I think my first thought was family," Ms Milne said.
"How it will impact in the future, on not only my children and my husband and my friends, but sort of your life, you're only 41 and not sure which way your life is going."
Before her diagnosis Ms Milne noticed tremors in her head, at first she was able to ignore them, until they progressively became worse and started to affect her balance.
"At the beginning, before any medication, they were quite light but then they got that bad that every time I walked it was almost like my brain was hitting my skull," Ms Milne said.
In only her second session with the support group Ms Milne seems quite calm and happy to take in as much information as she can.
"I think the first week was the most interesting," Ms Milne said.
"They call it a designer disease because everybody's so different and seeing the group, everybody is so much older and so much more developed into the disease."
In recent weeks the disease has impacted on Ms Milne's ability to work, stopping her from working altogether, which has been one of the biggest challenges yet.
"I've always worked, I've always worked through all my pregnancies, I've worked up until the day I gave birth and then straight after," Ms Milne said.
Now Ms Milne is on medication, which has stopped her head tremors, making life a little easier and she is just simply hoping to take away one key message from the group sessions.
"Just to be prepared for what may come, but I mean it may not come," Ms Milne said.
http://health.einnews.com/article/285541688/ni3qVPRU_-8S6Pdr

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