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This post was originally posted by Sue Waters on her personal blog here. Sue is not only the Support Manager here at Edublogs and CampusPress, she started this very blog, and has personally helped tens of thousands of educators – maybe even more. She’s the hardest working person we know, and we are honored to share her story here in hopes it helps others and spreads her important message. Sue, all of us that work with you are in awe of you every day.

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 percent 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.

MND infographic

MND Association Infographic

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 3 different types of masks, depending if she’s awake/asleep, and she has two different VPAP machines (day/night).

I keep her comfortable through the support of my family, the Silver Chain Palliative Care team, the MND Association of WA and support of the company I work for.

My Mum and her masks (naughty me took the other photo while she was sleeping!)
My Mum and her masks

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)! 

If you would like to help fundraise to fight for a cure or to support MND sufferers, please contact your local MND or ALS Association. There is a great list of associations from around the world here.

 

 

1 Comment

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  1. I totally agree with your topic we totally need to focus on this disease ! and prevent people from getting this disease

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