Get involved > Spotlight on MND > May 2016 > The best of times, the worst of times

Spotlight on MND


The best of times, the worst of times

Posted 3/05/2016 09:00:00AM by Amy Critchley

I heard the news while sitting in an open plan public service cubicle in Canberra. She said ‘It’s the one we didn’t want…it’s motor…neurone…disease’ and then just broke down crying on the phone.

I said several calming platitudes, while simultaneously googling MND at my workstation. I did not know a thing about it. The first thing I saw was a prognosis of 1-2 years on whatever website I’d opened up. I sat frozen with shock and the rest of the conversation is a blur.

I promptly stood up, told a relative stranger of a new supervisor that my Mum had just been told she has a terminal disease and said I needed to leave. It sounds a bit dramatic – but it actually was.

It’s a cruel twist that I also received the news of her passing in an open plan public service cubicle too – so it really was full circle.

Mum had a fairly typical onset of symptoms, weakness in a hand sporadically and then some falls and weakness in a leg. She was in her late 50’s, a kindergarten teacher and pretty active, so it did not go unnoticed.

There were the usual hundreds of theories on what it could have been over a six month period. She was told many things by many people ranging from carpal tunnel, a possible tropical insect infection, Multiple Sclerosis, Parkinson’s, vitamin deficiency…you name it.

She always knew MND was a possibility and it lingered in her mind from the moment she read about the symptoms. We all of course told her she was using ‘Dr. Google’ too much and being paranoid and crossed our fingers for ANYTHING other than that. You know things are bad when you are eliminating diseases and you are upset when they rule out something like MS.

Becoming my mother's carer

I took an 8 month period off work to move back home and assist with the hands-on caring for Mum. I had been on a foreign aid posting in the Pacific Islands at the time, but when I returned home for Christmas, I knew I could not go back.

So for 8 months I had no real income, no career progression, living 700kms from my partner and friends...but would I trade it? Heck no! I got to spend the last 6 months of my mother vocally speaking having fun with her as ‘ladies of leisure’ (her term!) and doing fun excursions daily. I truly treasure those times now even if it involved wheelchairs, commodes, pelican belts and spoon feeding her daily!

I got engaged and did eventually have to return to the realities of life and got expert at interstate highway driving every second weekend and holidays.  But in hindsight I’m SO grateful I let go of all of the social conventions of a busy professional young person and really prioritised that caring time with Mum.

When people ask me what it’s like to care for someone with MND, I often run them through what sounds like a mindfulness exercise…. imagine sitting somewhere, and then staying there perfectly still. You can’t walk to get anything or go to the toilet. You can’t open your mouth and talk. You can’t change the channel on the tv. You can’t move the position of your arms or legs. You can’t even scratch your nose or move a hair out of your eye.

And your mind is still working 100% perfectly.

It generally takes about one minute for most people to get how much care is involved for someone in the late stages of MND. So between family and Mum’s brilliant nurses – we “literally” were doing EVERYTHING involved in a regular day.

She was a lovely and gracious person to care for but some of the tasks included showering, dressing, toileting, feeding, medications, leisure activities, household paperwork and medical administration, writing letters, moving positions of arms and legs (including all through the night) and scratching itches!

The best of times, the worst of times

Best times – Being able to take a step back and put yourself in the shoes of the person living with MND. You end up so GRATEFUL that you are able to assist in even the smallest of ways for someone coping with these daily frustrations and challenges. What a gift to assist on the little things when this person is dealing with their mortality and the loss and failure of their body on a rapid, yet unpredictable path.

Mum was also fabulous at letting you know how much she truly appreciated the assistance even when she couldn’t speak (particularly with the more confronting jobs!), so that helped keep spirits up too.

Worst times – When everybody is tired and then something goes wrong. It was Murphy’s Law that if everyone was a bit strung out – you could probably bet that this is exactly when you would have a fall or some kind of accident…everything is always harder to cope with when your resilience is low.

Also keeping your head above the water from a depression point of view. It’s very hard watching the pain of the physical day-to-day losses being experienced by your loved one, so keeping a sunny demeanour and positive outlook as a support person is a constant challenge.

My hope for MND research and treatment in the future

I hope for absolutely ANYTHING.

Given it has already claimed the most important person in my life, I just hope for any progress.  A cure, a drug therapy to halt or slow progress, something to make the course of the disease more predictable, gene therapy, better symptom management, honest end-of-life discussions, a definitive diagnostic tool...or even an explanation. I hope for just anything to either stop it in its tracks or to provide empowerment to those diagnosed to have something to fight against.

My 8 year old has said, why don’t they just make new motor neurones and put them in to replace the dying ones? Obviously it’s not that easy – but I often hope for something simple like that to avoid thousands of new people and families in the future having to tackle this disease in its current form.

Amy and her mum, Lorraine, share some fun at home. 

Amy's wedding day.

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