About 30 people living with MND, their families and friends from South West Sydney and surrounds attended the Bossley Park MND NSW Living Well with MND Day on Tuesday 20 March. We were very fortunate to have many of the team from the Liverpool Hospital MND Clinic attending - sharing their expertise about living with MND and how the Clinic can assist.
Dr Dennis Cordato, Neurologist, gave a very informative talk about MND to start the day.
This included an overview of MND, clinical trials that are currently in progress in NSW, and diseases that mimic MND. He spoke of the new drug edaravone and answered commonly asked questions about medications and whether they make a difference in managing symptoms such as fatigue, cramps, spasticity, depression and anxiety, pain and insomnia. He also spoke about the importance of a multidisciplinary approach to care to enable good symptom management.
Catherine Gregory, Senior Speech Pathologist provided some excellent tips on communication strategies for the person with MND, for their communication partner and alternatives to speaking. Occupational therapists, Bianca Brady and Leonie Siddens, spoke about living with MND at home and brought with them a range of aids and gadgets for everyone to try out for when movement becomes restricted. The particular piece that entertained the crowd was the helping hand extending arm stick that could be extended across the tables at other participants!
David Wong, Head of Physiotherapy, demonstrated how one or two carers could use a transfer belt to assist a person with MND to transfer from sit to stand, and walking. He also spoke about how a carer needs to avoid pulling a person's arms when assisting someone change their position. A big message from David was to remind carers that they needed to look after their own positioning when assisting so they were not putting extra strain on their own body.
Hima Vedam, Respiratory Staff Specialist, has been a driving force behind the development of the Liverpool Hospital MND Clinic, concerned that people with MND in the region were not receiving the multidisciplinary care they required. At the Bossley Park Living Well with MND Day Hima covered simple strategies to help with breathing and explained how non-invasive ventilation works and how it can really help.
Finally Desi Secombe, Palliative Care Specialist, reminded everyone that palliative care really means to help people live well for as long as possible and that this includes symptom control, planning ahead, decision making, advocacy and supporting people during difficult conversations.
Everyone rated the day as either very good or excellent. People said that they now understand a little bit more about MND, they had a lot of questions answered and that they really benefited from talking with others with MND.
If you would like to attend a Living Well with MND Day, there could be one near you! During 2018 we are at Port Macquarie on Friday 25 May, Woden in the ACT on Wednesday 15 August and in Sydney at West Ryde on Tuesday 25 September. The day is free for people living with MND, their family and friends and lunch and refreshments are provided. You can register by emailing