National Motor Neurone Disease Week is celebrated each year in the first full week of May. The dates shift every year so it can begin on a Sunday and end on a Saturday. This year, we acknowledge Motor Neurone Disease (MND) from the 2nd to 8th May.
It’s is a time to recognise those who live with MND and the people who support, love and care for them. It’s also a chance to look at what’s being done to find a cure and to highlight resources that help manage MND symptoms.
What is Motor Neurone Disease?
MND is the umbrella term for a group of diseases where motor neurons progressively die. Motor neurons are cells in the brain and spinal cord that control the conscious movement of our muscles. As these neurons die, we begin to lose control over physical movements including walking, grasping, talking, swallowing and breathing.
It gradually paralyses a person and those affected are usually aged 50 years onwards. While MND progressively causes loss of movement, people’s cognitive abilities and senses often remain unaffected.
It’s a (usually) rapidly progressive, terminal neurological disease. Most with the condition die within two to four years of developing the disease. However, people like Stephen Hawking prove this doesn’t need to be the expectation.
People with MND
Not only did Hawking develop the disease early in life at the age of 21, he survived for 55 years – overcoming medical expectations. Another inspiring person is Lucy Lintott, who’s one of the youngest people to develop it (at 19 years). This year Lucy is 26 years old.
Since being diagnosed in 2014, Lucy’s started a blog, made a documentary, and last year during COVID-19 lockdown she gave birth to a baby boy. Through her advocacy efforts, she’s raised more than £120,000 for MND research.
Watch this tear-jerking video of Lucy as she has her portrait taken and breaks into tears (if your kids are watching, note the language warning). Seeing herself in the photograph reminded her of the person she’d been before MND. It made her realise that since her diagnosis she’d seen herself as two different people.
What causes Motor Neurone Disease?
Lots of research is being done to understand what causes MND and to find a cure. Although both these important questions have not been answered, there are some clues that will hopefully lead to positive results.
Here’s the list of causes scientists believe might be behind MND.
Possible causes of MND
- Viral infections
- Genetics (roughly 10% of cases are the result of a mutation in a gene)
- Chemical exposure and exposure to toxins
- Oxidative stress (an imbalance of antioxidants and free radicals in the body)
- Neuron inflammation caused by immune system response
- Premature ageing of motor neurones
MND doesn’t spread between people, however, it can be hereditary. The genetic code mutates and can be passed from parent to child. Familial MND is where more than one person in the same family is affected.
Although the cure is yet to be discovered (and we hope it happens soon), there is a treatment available in Australia to ease the symptoms.
National Motor Neurone Disease Week in Australia
This year COVID-19 has not hampered National Motor Neurone Disease Week celebrations. Anyone can participate and there are going to be walks across the nine states/territories as well as a virtual campaign.
Here’s what to look out for:
Walk to d‘Feet MND
Walk to d’Feet MND will launch national celebrations on 2 May. There are going to be numerous walks in each state and territory, so chances are you’ll be able to join in wherever you live. Contact the MND Association in your state/territory to find out where walks will happen.
Australia Moves for MND: Virtual campaign
MND Australia will be hosting a virtual campaign to raise funds for vital care and research. Anyone can sign up to take part in Australia Moves for MND (AM4MND).
MND in Australia
Here are some facts and figures about MND in Australia today:
- Two people in Australia die each day from MND
- Two people are diagnosed with MND every day in Australia
- The average life expectancy with MND is 2.5 years
- More than 2,000 people in Australia have MND
- There’s currently no known cure
Assistive technology for MND
Motor Neurone Disease progressively causes decreased mobility and many with the illness will need to use a wheelchair. While this can be a difficult transition to make, it provides access to moving around that would otherwise be lost.
It’s also good to know that although wheelchairs are a big investment, they can be protected against theft and accidental damage with wheelchair insurance.
Blue Badge is an Australian disability insurance specialist that provides this insurance at a reasonable cost. We also offer a 25% discount to people who have a disability parking permit.
National Motor Neurone Disease Week – over to you
Share your MND experience with Blue Badge readers in the comments. We want to hear your story.