WhyWeCarry
LIVING WITH MND
What is motor neurone disease (MND)?
MND stands for motor neurone disease. Motor neurones are the nerves that control our body movement.
With MND, something goes wrong with the motor neurones, and the messages from the brain stop getting through. This means the muscles that enable us to move around, speak, breathe and swallow fail to work normally.
As the nerve cells slowly stop working, muscles gradually weaken and waste.
MND Facts
1.
Every day, 2 Australians are diagnosed with MND, and every day 2 Australians die from MND.
2.
In 85-90% of cases of MND, the cause is unknown. There is currently no treatment, or cure for this disease.
3.
For every person diagnosed with MND, an estimated 14 members of their family and their friends will live with the effects of MND forever.
4.
Every MND journey is different. The progress, severity and symptoms of MND are different for everyone.
MND STORIES
No two people experience the exact same MND diagnosis, and therefore each person living with MND needs to be cared for in a way that best suits their needs.
When someone is given an MND diagnosis, it impacts everyone around them, particularly their family and friends. Supporting someone with MND can be physically, emotionally and psychologically challenging; this is why MND Victoria exists.
We walk the journey alongside people impacted by MND, so no one has to face this disease alone.
ASH
Ash has been helping care for his mum, Julie, since her MND diagnosis in 2024.
Whilst his dad, Trevor, is the primary carer, the whole family pitches in to support.
Everything they do is centred around creating experiences and making memories. They are determined not to let this disease take away their time together.
"MND changes plenty of things, but it doesn’t mean that the things that bring us joy, connection and a few laughs together have to stop.
As a family, we’ve tried to make this a team effort, and that’s my message for other families travelling this road. Embrace your team. Let people help. Share the load where you can."
Elissa
Elissa’s partner, Campbell, was diagnosed with MND in September 2024. His disease progressed quite rapidly, and within three months, he was using a wheelchair and had retired from work.
Elissa cut back on her work hours to help care for Campbell as they navigate life with MND together. This is often a hard reality for carers of people living with MND.
Despite these challenges, Elissa has been able to connect with other carers and families navigating a similar journey, through MND Victoria's Carers Lunches.
“To be surrounded by people who actually KNOW what it's like, on a day to day, moment to moment basis, was so comforting.
I think until you're living and caring for someone with MND, it's hard to fathom the physical changes that occur every single day and how hard it is to watch your loved one go through it".
Bernie
In 2024, Bernie was diagnosed with Kennedy's disease (KD)*, a rare inherited disorder that causes muscle weakening and wastage.
Bernie has always lived a very active life and isn’t letting his diagnosis stop him from going on adventures and doing what he loves.
An MND or KD diagnosis is life-changing, and each day brings with it new challenges to navigate and adapt to.
“Now that the symptoms have really set in, I’m having to create a new normal. And that’s scary, but it’s also exciting.
I feel like I've become part of MND Victoria now. The support is incredible. But bigger than any individual thing, it's just knowing that somebody is there."
*Due to the similarities in presentation between MND and Kennedy’s disease, MND Victoria is committed to providing care and support to people living with either disease.
WE CARRY TO LIGHTEN THE LOAD.
We carry to walk alongside people living with MND, to lighten the load for families and carers and to help fund the practical care and support they rely on.
By taking on the Carry The Load challenge, you are directly helping lighten the load for people like Bernie, Ash and Elissa helping ensure access to the supports they need to navigate their MND journeys.
