Disability Forum 6 November 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.

Copyright © 2016 DISABILITY ADVOCACY SERVICE INC. All rights reserved.