Support in melbourne for myositis
Someone very close to me has just been diagnosed with myositis. After a long hospital stay they are now at home but struggling with lack of support. Monash health provided almost no information about accessing care services, and the myositis association is quite small and underfunded
By comparison my dad has MND and the amount of support he gets is amazing. The MND association does incredible work. Through their equipment library he gets walkers, electric wheel chairs, mobility aids, and more all for free. His coordinator fights hard to get him all the home care supports he needs or access to respite
Myositis has a similar physical impact as MND but a different disease pathway (destroys muscle instead of nerves). My friend has had so much muscle atrophy they can barely walk on their own. Also struggling with dysphagia and frequent choking events. But they have to supply all their own equipment. There hasn't even been a discussion on what equipment they would need. And have only been approved for home care twice a week. Which means they only get to shower twice a week. It's honestly despicable
Can anyone here point me in the direction of additional supports? Organisations? Would the MND association help? How can I fight to get my friend the help they need to survive?