Centralian Advocate Newspaper – 29 Jan 2019

New Kid on the Block

Published in Centralian Advocate Newspaper
29 January 2019

By Annie Ernst, DAS Advocate

There’s a new kid on the block to support people in Alice Springs with movement disorders – the Parkinson’s Disease Support Group. This group is for anyone with Parkinson’s Disease, and people who care for someone with, or have an interest in Parkinson’s.
The Parkinson’s Support Group’s first meeting is on Thursday 31 January, from 6pm – 8pm in the Boardroom at the Gillen Club on Milner Road. The theme of this meeting will be ‘sharing’, so bring along an idea, strategy or item that has helped you (or someone you know) with some aspect of Parkinson’s. If you can’t think of something that you would like to share, you can still come along to listen and meet others.
If transport is an issue, or there are other barriers to you attending the meeting, but you would like to come, please contact the Disability Advocacy Service on 8953 1422. And please get in touch if you would like more information about any aspect of the group or its meetings.
The February meeting will be held on Thursday 28 February, from 6pm – 8pm at the Gillen Club, and will have a pharmacist as a guest speaker to address concerns and questions about managing medications. If you would like the pharmacist to answer a question or address an issue, please send your enquiries through to Annie Ernst, Disability Advocate at advocate@das.org.au at any time up until 28 February, and these will be passed on to the pharmacist before the meeting. If you come along to the meeting you will also be able to ask questions directly.
Planning for the group’s meetings and activities in the next six months is currently underway and it’s shaping up to be an exciting year! The Disability Advocacy Service encourages anyone who would like to be involved in planning meetings and activities for the second half of the year (even a single meeting) to get in touch.
Upcoming activities for 2019 include a speech therapist who will talk about communication (and do some ‘Yell Well’ with the group) in March, and there will be special activities and promotions for Parkinson’s Disease Awareness month in April. There are also plans to have occupational therapists address the group, as well as a visit by specialists from Parkinson’s SA (which is now supporting the NT with a name change reflecting this to occur in the future). Parkinson’s SA will video their seminars throughout the year (16 seminars in total) and make these available for the group.
The Parkinson’s Disease Support Group is a valuable opportunity for you to find and share peer support with others, and a great chance to socialise and connect with the Parkinson’s community!
Tune in to local Alice Springs ABC radio (783AM) on Tuesday 29 January, soon after 10am, to hear an interview about the Parkinson’s Support Group, and don’t forget to contact the Disability Advocacy Service on 8953 1422 for more information. Hope to see you soon!

Parkinson’s Support Group Meeting – Thurs 31/01/2019

Post by Annie Ernst, DAS Advocate

Parkinson’s Support Group Meeting
Date: Thursday 31/01/2019
Time: 6:00pm – 8:00pm
Location: Boardroom at the Gillen Club (located on Milner Road)

There is a Parkinson’s Support Group meeting on Thursday 31 January from 6pm – 8pm in the Boardroom at the Gillen Club on Milner Road. The theme of this meeting is “Sharing” – please bring along an idea or strategy or item that has helped you (or someone you know) with some aspect of Parkinson’s Disease.  At the bottom of this post are links to both a promotional poster and an agenda for the January meeting. If you would like hard copies, they are available at the Disability Advocacy Service (DAS) Office – or give me a call and we can organise what you require.
Please publicise our meetings – we would like to reach as many people with Parkinson’s Disease as possible. DAS can provide posters for you if you would like to distribute them.
If you or someone that you know would like to attend the meeting and is having difficulty with transport to and from, please let me know.
The February meeting will be on Thursday 28 February from 6pm – 8pm at the Gillen Club and we will have a Pharmacist as a Guest Speaker to address some concerns and questions about managing medications.  If you have any particular questions and concerns that you would like the Pharmacist to consider please send them through to me at any time and I will pass them on prior to the meeting. You can also of course ask questions at the February meeting.
I am in the process of planning meetings and activities for the first six months of the year (it’s looking exciting – come along to the January meeting for more info!) and am hoping that one or more people within the group will take on planning the second half of the year (or even a single meeting) – anyone who would like to do so will of course have the support of the Disability Advocacy Service office.
If you are able to tune in to the local Alice Springs ABC radio next Tuesday 29 January, I will be interviewed by Emma Sleath about the Parkinson’s Support Group soon after 10:00am.

Centralian Advocate Newspaper – Disability Forum 6 Nov 2018

Support for People with Parkinson’s Disease

Published in Centralian Advocate Newspaper
Tuesday 06 November 2018
By Annie Ernst

Currently there are not many supports for people with Parkinson’s Disease in Alice Springs, and even fewer in remote communities in Central Australia.

Parkinson’s disease is a chronic progressive neurological disorder that most noticeably affects movement. People with Parkinson’s may have tremors or shaking, move slowly, have rigid muscles, or have trouble walking. These are some of the more common motor symptoms although there are others such as freezing (when your feet feel glued to the floor or you find yourself unable to initiate movement), slumped posture, balance problems and loss of facial expressions.

Non-motor symptoms which can occur include sleep difficulties, softer voice, swallowing difficulties, reduced sense of smell, bowel and bladder changes, cognitive changes, anxiety and depression.

Parkinson’s is a very individual disease and each person who has Parkinson’s will experience different symptoms to varying degrees, and affecting different parts of their body. For example, one family member with Parkinson’s could experience a tremor in their right hand, but few other movement symptoms, while another may experience symptoms such as tremors, muscle rigidity and difficulty walking. Parkinson’s is very different for each person and so is the progress of the disease.

Although Parkinson’s is commonly thought of as a disease that affects older people, it can affect people of any age. Actor Michael J Fox was diagnosed with Parkinson’s at the age of 29. Young people with Parkinson’s will often have additional considerations to those who are diagnosed later in life, such as how the disease affects their careers or parenting. Navigating issues such as how to maintain your livelihood and independence are frustrating at any age, but are acute for younger people with Parkinson’s. For people young and old, it can be lonely – and sometimes scary.

If you are someone with Parkinson’s, you have probably gone through many emotions both before and after diagnosis – from grief and anger, to relief at having a diagnosis, and concern about what this means. Although the disease is experienced differently, it can help to talk to other people who have a diagnosis of Parkinson’s are facing similar challenges and uncertainties.

Currently there isn’t a Parkinson’s Disease Support Group in Alice Springs although there are many of us in town and in communities throughout Central Australia who have Parkinson’s. Support groups can provide reassurance that you’re not alone and give you a safe and supportive environment to share your feelings, learn from and help others, and gain coping strategies to enhance your quality of life.

If you or someone you know and care about has Parkinson’s, or if you’re a health professional with an interest in Parkinson’s Disease, please come along to an initial meeting to gauge interest in setting up a Parkinson’s Support Group at the Disability Advocacy Service (DAS) at 4/54 Reg Harris Lane, Alice Springs at 5pm on Thursday 22 November. For further information, or to let us know that you’re coming along, please telephone 8953 1422.

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