MND Victoria Logodonatenow

Twitter pageFacebook pageInstagram

Welcome to MND Victoria

MND Victoria provides and promotes the best possible care and support for people living with Motor Neurone Disease (MND).

This includes a range of services to support people with MND, their carers, family, friends and health professionals.

Find out more information about Motor Neurone Disease.

>> Please make an Online Donation

How can we help?

Information for people with mndInformation for family and friendsInformation for health professionals

  • Compassion not sympathy: A carer’s perspective

    By Geoff Finnigan

    Not only is this disease so horrible to endure for the sufferer of MND.

    But the other side of the coin is the partner and family trying to cope with the emotional issues that are created.

    Read more ...  
  • MND News: September/October 2017

    Read our September - October 2017 MND News to find out about the latest news and research!

    Read more ...  
  • Research opportunity: Breath-stacking in Neuromuscular Disease

    Lung Volume Recruitment in Neuromuscular Disease: Can breath-stacking improve lung function, respiratory symptom and quality of life for people with neuromuscular disease?

    Not being able to take deep breaths or cough forcefully are two examples of the breathing problems that people with a disease affecting the nerves and muscles, such as Motor Neurone Disease, may face. In neuromuscular diseases, breathing complications are one of the main causes of discomfort, disability and ultimately death.

    A technique called 'lung volume recruitment' (or 'breath stacking') uses a specially designed bag to deliver breaths of air to people via a face-mask or mouthpiece, thereby allowing people to take a series of deep breaths occasionally. This may improve lung volume or breathing capacity, coughing ability and ease of clearing phlegm in this group of people.

    This project will investigate the effect of breath stacking on these factors. Improving breathing function is an important aim of treatment for people with neuromuscular diseases and may reduce symptoms, improve quality of life and survival.

    For further information regarding possible participation in this research project, please contact the Study Co-ordinator, Nicole Sheers: This email address is being protected from spambots. You need JavaScript enabled to view it. or: 03 9496 3877

    This research project is being conducted through the Institute for Breathing and Sleep at Austin Health, Heidelberg, Victoria.

     

Cheryl’s MND Story

When Cheryl received the diagnosis of MND in 2002 she was 32 years old, married and had a 3-year-old son, Mark. Over the next few years Cheryl found it increasingly difficult to maintain her independence, especially walking up the stairs of their town house, so Cheryl made the decision to move into her parents’ house which is all one level.

For many years Cheryl's mother Rose, and father Andrew looked after Cheryl, even during times when they were sick themselves. Cheryl's longterm carer Mary-Ann, said, “even though her Dad was sick he still supported her … other people might have given up but Cheryl's parents were always there for her.” Andrew and Rose always put Cheryl first and strived to ensure that she was always cared for properly. Cheryl couldn't have asked for more loving and caring parents. It was for these reasons that Cheryl decided that she wanted to do something very special to honour her parents.

Cheryl started organising a special surprise evening around two years ago which began with writing to about 10 different people, including a few celebrities, but unfortunately she received few responses. Cheryl then asked one of the MND volunteers, Chris Robson, for help and as a last resort Chris emailed Cheryl's local council, Darebin Council, about her proposal to present an award to her parents. Much to Cheryl's delight, the Civic Events and Engagement Officer, Bronwyn Ryan- Mercer, said yes and that Cheryl's parents will be presented with a Certificate of Appreciation.

The following words are from Cheryl:

Tonight was a very special night for Mark and I to say a huge thank you to Mum and Dad, for the amazing care they gave us over the past 14 years. This special evening was a surprise for Dad and to get Dad to the venue I told him that my carer, Mary- Ann was nominated for an award and that she invited us to the award ceremony! Bronwyn even gave Mary-Ann a "nominee" badge so it looked official, that was funny (Cheryl and Mary-Ann laughed as they told me about this part of the story). The award ceremony was held at Preston Town Hall with my family, friends, carers and the MND support group in attendance (see photo).

Cheryl

From left: Sam (friend), Lisa, Mark, Aunty Helen, Andrew (my father), Chris, Liz, Ron, Bronwyn, Andrew (nephew), Mary-Ann, Marilena, John-Paul and Lenae.

First a few Australia Day Awards were given out and then Dad was presented with his Certificate of Appreciation, the certificate also had Mum's name on it, of course. A few minutes before Dad's name was called out I felt nervous and sick because I didn't know how Dad would react when he heard his name. I had to sniff my peppermint oil, its like smelling salts for me! After Dad received his certificate my brother, John-Paul, gave Dad the two presents I bought: a framed cartoon of the photo of the huge marlin that Dad, John-Paul and my nephew caught and for Mum, a gorgeous purple Swarovski crystal rose with a stem and frosted water drops on the leaf, which Mum would have absolutely loved.

Later in the night Mark sang 3 songs and Mark wrote one of the songs which is called “Thank You.” It’s about thanking my parents for everything they did for me and Mark. It was a wonderful night and I wish Mum was there to receive her certificate and gorgeous crystal rose. A huge thank you to Chris Robson for helping me find a venue, another huge thank you to Bronwyn from Darebin Council for kindly having us as part of your Australia Day Award ceremony and for making my vision turn into the wonderful night that I wanted and one more huge thank you to my brother John- Paul for doing all the running around for me. I really appreciate everyone's help.

Thank you, CHERYL BALAS

Andrew Cheryls dad

This article was originally published in MND News: March/April 2017. To submit your MND Story, please email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Newsletter sign up

Subscribe to our Newsletter and other updates
Please wait