"It’s the understanding, knowing that when I phone you, MND Victoria always understands what it is that we are feeling, or what it is the we are needing, you just understand."
There are so many stories that we could share about the impact motor neurone disease (MND) has on those diagnosed, their families, work colleagues, friends and the health professionals who care for them.
Pam first registered with MND Victoria in February 2017. A true “free spirit”, Pam - poet and avid photographer who loved sharing her work - had spent many years dividing her time between Port Fairy in Victoria and Cook Town in Queensland.
As Pam was in her mid-70s when first diagnosed she was not eligible for NDIS support so access to support from the Association at no cost to her was a huge weight off her mind and that of her extended family.
Pam’s MND Advisor Trish visited her many times in Port Fairy to help her navigate the healthcare system and linking her with appropriate health professionals. As a result of Trish’s ongoing support, and that of her sister, nieces, friends and palliative care staff, Pam was able to stay connected with family, friends and her community, sharing her poetry and photos and hearing from those she loved who could not get down to see her.
Although Pam’s disease progression was fast the Association was able to meet her needs by providing her with a number of accessibility items including a petite armchair, bridge chair, nebuliser, shower stool, walking chair and Roho cushion, all at no cost to Pam or her family.
MND Victoria is the only organisation that focusses on people living with MND. The Association’s mission is "to provide and promote the best possible care for people living with MND". These aren’t just nice words – they are behind every action and activity undertaken by staff, volunteers and the MND Victoria Council.
This story was originally published in our February 2018 Donor Update.