People living with MND are often faced with difficult decisions for managing their symptoms and maintaining their quality of life as the disease progresses.
Some of the options people are asked to consider are gastrostomy, genetic testing, assisted ventilation, communication equipment and advanced care planning.
MND Decision Tools is an Australian website developed to assist people with MND to make decisions for their care and quality of life, particularly when the decision is hard to make, or there is no clear answer.
Tools for three topics - gastrostomy/PEG, predictive genetic testing and assisted ventilation (NIV) - have already been developed and are ready to use, with other topic areas to be developed in the future. Each tool explains the advantages and disadvantages related to the decision and guides you to consider your personal feelings about each choice.
Please note – these pages are under construction and not ready to use yet
- Communication equipment
- Advance Care Plan
- End of Life Care
The MND Decision Tools project is led by Dr Anne Hogden and the site was developed in consultation with an expert panel of people with MND, their family members, health professionals, MND Association representatives and researchers.
MND Decision Tools is available free online and you do not need to register to use the site. See https://mnddecisiontools.com/ for more information.
MyMND website
myMND is a collection of educational resources for people living with MND/ALS developed in collaboration with MNDA (UK association) and the University of Sheffield in England. Although it’s a British resource it contains useful information and several videos that show interventions such as PEG tubes and NIV (non-invasive ventilation/Bi-Pap) and may be helpful to anyone with MND who is considering those decisions.
https://mymnd.org.uk/