When a doctor first suggested that my mother probably had Motor Neurone Disease (MND), also known as ALS (Amyotrophic lateral sclerosis), I told him to remove it from the list.
Why? Because how can that be? Only people you don’t know get MND.
Well — people you know can get the disease. 🙁
And it’s a cruel, progressive, terminal neurological disease that can strike anyone. MND has no cure or treatment, and it kills over 50 % within 2 years of diagnosis.
MND attacks the nerves that control movement so muscles no longer work. Symptoms vary considerably between MND sufferers as it depends on which muscles are affected.
I’ve cared for my mum since she was diagnosed with advanced MND 6 months ago. She requires 24/7 care which I couldn’t provide without the support of my family, the Silver Chain Palliative Care team, the MND Association of WA and support from the company I work for.
My goal is to raise awareness of Motor Neurone Disease (ALS) to make others understand why donating to MND associations is important for:
- Supporting people with MND
- Funding research to find a cure
Enduring Motor Neurone Disease
Make time to watch Enduring Motor Neurone Disease (MND/ALS) to appreciate how the disease impacts the sufferer and their family.
Spread the Word!
How can you help? Spread the word and the facts by sharing my post on your social networks.
MND Associations can’t support sufferers and fund research without donations. Increased awareness helps people understand why it’s important to donate and help fundraise.
Our MND Story
And for those that want to know our story …
Symptoms vary considerably between MND sufferers as it depends on which muscles are affected.
My mum has the least common form of MND and is a respiratory onset MND. Most MNDs start with limb onset and eventually have their respiratory muscles affected.
So far the disease has had minimal impact on my mum’s limbs, speech or ability to swallow but she has extreme drop head syndrome and her respiratory muscles are so affected that she is attached to non-invasive respiration 24 hours a day to ease the respiratory discomfort. Her room is her life because moving too much, even attached to a VPAP, causes too much discomfort.
It’s like being constricted by a boa constrictor and not being able to breathe.
Her day is spent juggling between 4 different types of masks, depending if she’s awake/asleep, and she has two different VPAP machines (day/night).
I care for her full time. My days are spent juggling her needs, my work, my family and fitting in life.
And my story? I fear what all other MND carers fear. What lies ahead? And am I strong enough to face the journey ahead?
Thanks for helping to spread awareness of Motor Neurone Disease (MND/ALS)!
For those that would like to donate to an MND Association or ALS Association here are some links: