Raising Awareness of Motor Neurone Disease (MND / ALS)

Raising Awareness of Motor Neurone Disease (MND / ALS)

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.

And Justin Yerbury’s fight to find a cure.

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 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.

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.

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:

10 thoughts on “Raising Awareness of Motor Neurone Disease (MND / ALS)

  1. Oh Sue
    I am so sorry for what life has thrown at you, your Mum & your family.
    It is cruel It is so unfair & troubling
    I did watch the video & it really did hit a personal chord.
    My SIL was diagnosed with brain cancer two years ago and my daughter has 4 little ones
    My SIL has movement but his brain has been damaged during the two surgeries, chemicals & radiation therapies My daughter faces a similar situation with regard to her relationship with her husband but not the severity of every movement & speech & eating….MND is really cruel
    We are selling up and moving down to Newcastle, where they recently moved, to be closer to our other children & their partners & kids,
    I try to appreciate how hard it is watching your Mum suffer and trying to care for her, but it is impossible until you live it
    Thank you for raising other people’s awareness of this insidious disease
    I will send all the positive vibes I can to you & your family.

    1. Hi Audrey

      Sorry to hear about your SIL. That is really hard for them all and they will appreciate your support.

      I selected that video because it shows before/after, the impact of the disease and why we need to search for a cure.

      Sue

    2. Audry,

      Though we have never interacted, I am sorry to hear about your SIL. What can I say? Moving near your daughter & helping her is the decision from heart & I send you good thoughts for upcoming battle.

      Best wishes.

      Purviben
      @TrivediZiemba

  2. Sue,
    Motor neuron diseases are devastating for the whole family. Having such a short time between onset of symptoms and death, with the intervening time spent in worry and frustrating, is a nightmare. I am sorry your Mum is suffering this way and I hope your family finds the strength and support you need as caregivers. I have joined a Facebook group dedicated to Ataxia Caregivers as my siblings are in a bad way and I see that there is also a group for MND/ALS Caregivers as well. https://www.facebook.com/ForPeopleWithAlsAndCaregivers/

    1. Hi Gail, thanks for the suggestion! I’m also a member of our local MND association which has events for caregivers but because mum was a very late diagnosis of MND , and she needs high level care, I have limited times I can go out. I follow MND associations on FB but hadn’t thought to search for groups specific caregivers.

      Sorry to hear about your siblings and Ataxia. It must be hard on all of you. My thoughts are with you.

      Sue

  3. Sue,
    I’m praying for all your family and your Mom. My Dad passed from problems related to ALS in 2009. He first noticed problems swallowing food and talking. It was sad to see him struggling against what his body wouldn’t do for him anymore. I’m glad you have support. There is so much to do that it can become overwhelming quickly. All you can do is love her for as many minutes as possible.

    I will share your article to increase awareness. Thank you for taking the time to write the words to your family’s story down.

    1. Hi Brenda

      Thanks for sharing my article to raise awareness and sorry for your loss. It is such a horrible disease that affects each differently.

      Sue

  4. Dear Sue, I was wondering where you could be, as there was no signs of your presence in our Blogging Course and I missed you. I’m very sorry about your beloved Mother. I will help to spread the word about this cruel disease.
    Both my Mom and Dad died with painful respiratory diseases: lung cancer, in 2009 and COPD in 2014. And although it’s the last life lesson we must learn from them – we shall all suffer and dye – it’s always heart-breaking, because they take such a huge and central place in our love and gratitude.
    I would like to share with you the story of Anne Dauphine Juliand, a young French Journalist that wrote “Two small footprints on the wet sand” and has recently be the director of an astonishing documentary “Les Mistrals Gagnants” that I encourage you to watch.
    When doctors told Anne Dauphine that her first two years old little girl suffered from Metachromatic leukodystrophy (MLD) and she would live just some months progressively losing the use of all her muscles, they also said that, as the mother was pregnant, she should underwent the exams concerning the baby: they found it was another little girl and with the same illness.
    Anne Dauphine accompanied her older daughter, Azais, day after day until she died when 4 years old; the doctors tried a bone marrow transplantation in Thailis and her younger daughter could live ten years, but always deeply and progressively ill.
    In February 2017, this incredible mother directed a documentary about six children suffering from serious and incurable illness, who are friends and share with us their sensible worries and their unlimited joy.
    I think that only these kids can bring us hope and courage to go ahead. As Anne likes to quote: “we must add life to days when we can’t add days to life”.
    My thoughts and prayer are with you, your Family and your Mum.
    Ines
    https://www.amazon.com/Two-Small-Footprints-Wet-Sand/dp/1611458242
    https://www.youtube.com/watch?v=fTFMkUD-hdo

  5. Hi Sue, it is so sad to read this. I do hope that you can work through it all and I admire you and think it is wonderful that she has a daughter like you who will care for her. Take care as it will zap most of your energy and take up so much of your time. My thoughts and prayers are with you, too.

  6. Sue,

    What can I say that you haven’t heard of felt before? Sorry to hear about your mum. Your mum and you are lucky to have each other. Make sure to lean on others when needed and take 5 minutes at a time.

    Thanks for sharing the story & message with us. Our warm wishes are with you.

    Purviben

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