Motor Neurone Disease Care Guides

Topic Library · Motor Neurone Disease Guides

Motor neurone disease: everything in this condition is a race, and most people start late

Two Australians are diagnosed with MND every day and two die every day. The average time from first symptom to diagnosis is thirteen months; the average survival from diagnosis is two to three years. Which means a third of what people have is spent not knowing, and much of the rest is spent waiting — for an assessment, a wheelchair, a bathroom, a funding decision. These guides are written around that problem. They cover the things that can be made to happen faster: the NDIS priority pathway that decides access in two to five business days and that almost nobody is told about, the state association loan libraries that will deliver a powered wheelchair or a BiPAP machine free without any funding approval, the ventilation that extends life more than any drug, and the voice banking that cannot be done later. They also cover, plainly, the age-65 line that puts most Australians with this disease on the wrong side of a $194,000-a-year funding gap. Written by a registered NDIS provider. Every figure is sourced, and where the evidence is thin we say so.

2,752

Australians living with MND

2 a day

Diagnosed, and two a day die

13 months

Average from first symptom to diagnosis

50%+

Are 65 or older at diagnosis, and outside the NDIS

What MND is, how to get diagnosed, and which system pays

Four guides covering the condition itself, the thirteen months most people spend not knowing, and the single line that decides whether support is funded at $302,000 a year or $108,000.

Guide · 14 min readWhat Is Motor Neurone Disease? An Australian GuideThe types and what distinguishes them, why eye movement is spared and what that makes possible, and the Macquarie finding that Australian MND deaths have trebled since 1986 with nobody able to say why.

Guide · 14 min readGetting an MND Diagnosis: The Pathway and What to Insist OnThirteen months is the Australian average from first symptom to answer. Why the delay happens, what EMG actually shows, the treatable conditions that mimic MND, and the specific sentences that move things.

Guide · 15 min readMotor Neurone Disease and the NDIS: List B and Priority AccessMND is on List B, not List A, so function still has to be evidenced. But there is a priority pathway that decides access in 2 to 5 business days, and almost nobody is told it exists.

Guide · 15 min readMND Over 65: The Age Bar and the $194,000 It CostsOver half of Australians with MND are 65 or older at diagnosis. The average NDIS package is $302,000; the Support at Home maximum is $108,000. What can still be done, and what cannot.

Breathing, swallowing and speech

Three systems fail in MND, and how each one is handled changes both how long somebody lives and what those months are like.

Guide · 15 min readBreathing and MND: Non-Invasive Ventilation and Cough AssistThe most effective life-extending treatment in MND, worth up to 18 months — and a quarter of Australians surveyed had never discussed it with anyone. The nocturnal signs, the thresholds, and who misses out.

Guide · 14 min readEating, Swallowing and PEG Feeding With MNDWhy waiting does not preserve the feeding tube option but removes it, the 5 to 10 per cent weight-loss marker, PEG versus RIG, and why most people keep eating afterwards anyway.

Guide · 14 min readCommunication and Voice Banking With MNDAbout 80 per cent develop speech changes, and voice banking cannot be done retrospectively. Message banking, eye gaze, and the one-page profile worth writing while writing is still easy.

Cognitive change, and the documents with a deadline

MND was described for a century as a disease that leaves the mind intact. For the majority, that is not true — and it changes when the legal and treatment decisions have to be made.

Guide · 14 min readCognitive and Behaviour Change in MND and MND/FTDOver half have some change, up to 15 per cent develop frontotemporal dementia, and the changes sometimes arrive years before any weakness. Why apathy is not depression, and what else to rule out first.

Guide · 15 min readPlanning Ahead With MND: Documents, Money and DecisionsThe superannuation and insurance benefits MND Australia says most people with a terminal diagnosis never know about. Plus the documents that need a signature, palliative care, and voluntary assisted dying.

Where speed matters most

The standard equipment and approval cycle is slower than MND progresses. There is a free, fast alternative that almost nobody is told about.

Guide · 14 min readEquipment and Home Modifications With MNDState MND associations lend powered wheelchairs, hoists, beds and BiPAP machines free, with no funding approval needed and delivery included. Plus prescribing ahead of need, and the bathroom problem.

Guide · 14 min readSupported Independent Living and 24-Hour Support With MNDThe overnight arrangement decides most of the cost — around $188,000 a year of difference. The high intensity supports MND needs, the hospital bag, and the questions that expose a provider.

Guide · 14 min readFamilies and Carers: Living With MND at Home5.37 million hours of unpaid care a year, 37.5 hours a week each, about $133,626 per household in lost income. What reduces the load, what to tell the children, and the conversations with a closing window.

Guide · 14 min readSupporting Someone With MND: A Guide for Support WorkersSensation is intact, so every bad position is felt. Losing speech is not losing intelligence. What to escalate the same day, why oxygen can make things worse, and how not to burn out doing this.

If you read nothing else here

Three phone calls, worth making this week

Two threads run through every guide in this library. The first is that almost everything in MND takes longer to arrange than the disease takes to progress, so the only workable approach is to run things in parallel and prescribe ahead of need rather than in response to it. The second is that the most useful resources in Australian MND care are the ones nobody mentions — the priority access pathway, the free equipment libraries, early palliative referral for symptom management, and the superannuation and insurance provisions that MND Australia says most people with a terminal diagnosis never find out about.

Your state MND association, on 1800 777 175. Free. They assign an advisor, and their equipment loan library will supply a wheelchair, hoist, bed, communication aid or in some states a BiPAP machine at no cost, delivered and set up, with no funding approval needed — whether you are in the NDIS, in aged care, or waiting on either. The NDIS, on 1800 800 110, if the person is under 65: apply now and ask explicitly for a priority eligibility decision on the ground of unexpected significant deterioration in functional capacity. Access depends on age at application and the door closes permanently at 65. My Aged Care, on 1800 200 422, if they are over 65, asking for priority assessment with a letter stating the condition is rapidly progressive. And ask your neurologist for referral to a multidisciplinary MND clinic, which is associated with longer survival and with actually being offered the treatments that work.