I never thought an additional diagnosis of Motor Neuron Disease could be a good thing, but wow.
Since I was diagnosed in October 2024, I got in touch with Motor Neuron Disease Queensland. I provided them my diagnosis letter, and discovered that they are based (so have their Headquarters) in the same suburb as me, and within a 5 minute drive away. I made an appointment to see a Support Coordinator, and we spoke to almost 2 hours.
I had reached the point where I knew it getting harder and harder to hold a job down, and companies were asking hard questions about the nature of my illness that I had to disclose. Aside from that, I was beat. The stress was becoming real and I was more and more fatigued. I had started to collect forms, documents, applications and evidence for the Disability Support Pension (DSP – Australia’s disability social security).
I knew how difficult this is to get, and I knew it could take over a year to get an answer so had joined a few Facebook advocate groups of Q&A format style that also supplied checklists and forms. When I explained this to the Support Coordinator, he said “you haven’t met our MND Nurse and Social Worker yet”.
What happened afterward I can only describe as a miracle. Not only was my DSP application fast tracked to approval status within 3 working days as a Terminal Illness, but I was also streamlined for NDIS (National Disability Insurance Scheme). The National NDIS is Australia’s national scheme that provides support and funding to eligible individuals with permanent and significant disabilities.
I actually didn’t realise at the time that the stress would continue to leave my body over the next few months, when the reality of having such an incredible support system really sank in. No more 1-2 hour commutes to add to fatigue levels. No more managing unsupportive managers and snarky, prissy co-workers or office politics.
Still, I did shed a few tears walking back to my car the afternoon I left employment, as I knew it, for good. For me, its one of those moments in life I will never forget. No retirement party, no gifts. Just chips and cheesecake with some lovely colleagues who thought at 41, I was simply ending a 6 month contract.
I then flew back in February to New Zealand to spend time with family and a special few friends (who had had the news of my new diagnosis now), and my mother and I were able to have the initial meeting with my Support Coordinator and NDIS Senior Planner over Zoom. From there was a very straight forward process of tailoring my plan and finding a plan management organisation.
So, it turns out that MND is most certainly acknowledged as a very serious illness. At least in Australia. The only area I have found to be a bit sub-par, is Queensland being the only state in which the MNDA does not receive ongoing government funding, and so they must mostly rely on donations, community support and sponsorship. NDIS is not available for those over the age of 65. Because the majority of people to have an MND diagnosis are over the age of 65, this can spell a lot of trouble financially for this cohort, who must rely on their own savings, or allowances through My Aged Care.
The Queensland goverment has recently declined an appeal for funding MNDQ.