The medication riluzole, which is often prescribed to people with motor neurone disease, is now available in liquid form under the Pharmaceutical Benefits Scheme (PBS). Riluzole is anti-glutamate medication that appears to block the release of glutamate from nerve cells (neurones) and for people with the most common forms of MND it probably prolongs median survival by two to three months (median is the mid-point – half those taking riluzole have survival prolonged by more than two to three months).
The MND NSW e-news April 2019 edition was emailed to members and subscribers on 10 April. You can read this edition here. Get the e-news delivered your inbox by subscribing to the MND NSW e-news.
Carer Gateway provides information about the services and support available for people who care for someone with a disability, chronic illness, dementia, mental illness or who are frail aged. This service is available via www.carergateway.gov.au or by phone 1800 422 737 Monday to Friday, from 8am to 6pm. Educational resources recently published on Carer Gateway include Dealing with stress, Effective communications techniques and Recharge and reconnect
‘Don’t give me eggs that bounce’ and ‘It’s all about the food not the fork!’ are two new cookbooks by Peter Morgan-Jones that provide delightful nutritious meal ideas that cater to an array of dietary or swallowing needs. The books were written in collaboration with a speech pathologist and palliative care specialist and provide practical and expert advice so food can remain to be a pleasure and a comfort. A third book in the series, ‘Lobster for Josino’, provides advice and tips about preparing food for loved ones at the end of life and contains more than 100 innovative and delicious recipes. The MND NSW Library has several copies of the cookbook for free loan. For more information contact the MND Info Line ph 1800 777 175 or This email address is being protected from spambots. You need JavaScript enabled to view it.. Or, if you would like to purchase your own copy (cost $35-$40 each less 25% discount using code available from the MND Info Line ph 1800 777 175 or This email address is being protected from spambots. You need JavaScript enabled to view it. until 31 July 2019), see Hammond Care https://www.hammond.com.au/shop/food-culture.
The term 'home care package' refers to a fixed amount of money allocated by the federal government to an older person to provide services which will enable them to continue to live independently. You can read more about what a home care package is and who is eligible in the excellent overview provided on The Conversation website Explainer: what is a home care package and who is eligible?
