The Australian Bureau of Statistics has established that 1.2 million Australians have a communication disability, and this includes people living with MND who experience difficulties with their speech. This week is Speech Pathology week 2020 and the theme is ‘communicating with confidence’.
I spend a lot of time pondering what information you’d like me to share when we’re putting together our newsletters. This edition I have decided to keep the information both short and practical because there are so many things to focus on at the moment.
The MND Community have always been strong in supporting and encouraging one another. MND NSW are working hard to ensure these connections continue, particularly during the difficulties of 2020. To that end we are offering a range of online events and get togethers, that continue the tradition of information sharing within our community.
Things to be wary of in alternative or off-label products
In 2009, ALS Untangled was formed to help people with ALS (MND) make better informed decisions about alternative or off-label products. The team at ALS Untangled includes 120 clinicians and scientists from 11 countries and they collaboratively review new treatments and therapies that people within the ALS/MND community would like to know more about.
Last month, I wrote to you excitedly and announced that we were back out and about and providing face to face visits. This month, I have to let you know that we have had to take a cautious step back while the current issues in NSW are being managed. We are providing some limited face to face services where possible, so please be aware we will do our best to accommodate your requests where possible and where safe to do so. As I mentioned in our last newsletter, this is no doubt, our new normal for the foreseeable future.
