5 Facts about Motor Neurone Disease
When most people hear the words "Motor Neurone Disease" not much comes to mind? Unlike things such as cancer, heart disease, diabetes etc MND doesn’t often make the headlines. But for those who live with it or care for someone who does, they know how relentless and devastating it is. I want to shed some light on this disease because the more we know, the more we can help.
These are the facts that shocked me the most when I was going through helping my mum after she was diagnosed with M.N.D.
1. Motor Neurone Disease has NO Prevention, NO Treatment and NO Cure.
This one was the hardest for me to learn about because it’s what makes the disease so devastating, it literally has a trifecta of the things you specifically don’t want.
No Prevention: There’s no way to predict or stop MND from occurring. It strikes randomly in most cases, leaving no time to prepare or intervene. So no matter what you do, it won’t make a difference in getting or missing this disease.
No Treatment: While some therapies can ease symptoms, there’s no treatment to halt or slow the progression of the disease. Once it starts, it doesn’t stop. So once you’ve been given the life changing news of being diagnosed with MND there is nothing the doctors can offer to help you.
No Cure: This is the hardest one out of all 3 because if you could either prevent or treat MND it would ease the devastation but unfortunately there is nothing that can be done.
2. The average life expectancy after diagnosis is just 27 Months or 800 days.
After someone is diagnosed with MND they have roughly 800 days left to live, this also looks like 27 months or 2.5 years. Approximately 1/3 of people die within 1 year and more than half within 2 years.
Because there is no treatment to slow this down or cure to solve it, MND rapidly progresses leading to these horrible statistics. Although this isn’t the case for everyone as Stephen Hawking lived for 50 years with ALS.
3. Roughly 90% of M.N.D cases are completely RANDOM with NO family history.
These cases are classified as "sporadic MND," meaning they develop without a known genetic link or familial pattern which means that roughly only 10% of cases are hereditary / familial.
For other diseases this is reversed where most cases will be hereditary meaning most people outside won’t have to be too concerned about being diagnosed with it whereas for MND it doesn’t matter.
4. Your lifetime risk of developing M.N.D is approximately 1 in 300.
In medical terms 1 in 300 is considered “rare” with GPs only seeing a few cases of MND during their career. I’m not in the medical industry but to me 1 in 300 sounds somewhat common - think when you go to the shops, you would easily walk past more than 300 people so to imagine that someone you’re in Woolworths with will most likely develop MND is crazy to me.
5. Locked in syndrome
This is a severe form of paralysis that can occur in individuals with advanced stages of MND. It is characterized by the complete loss of voluntary muscle movement, except for the eyes, while the person remains fully conscious and aware of their surroundings. This syndrome is a result of the degeneration of motor neurons that control voluntary muscle movements, leading to paralysis of nearly all muscles in the body, including those necessary for speech, swallowing, and breathing.
