MND. A Personal Perspective
by Dr Belinda Chuah
My name is Belinda, I am 43 years old, the proud mother of Judd and loving wife of Andrew.
I write to share my personal story about Motor Neurone Disease (MND).
Andrew, Belinda and Judd
It is four weeks since my life changed completely. On 4th May 2022, I was unexpectedly diagnosed with ALS (amyotrophic lateral sclerosis), a form of Motor Neurone Disease (MND). MND is a neurological disease that destroys motor neurones in the brain and eventually leads to paralysis in the body. In MND, no one person is the same. Where the weakness first starts, how the weakness progresses, and the rate at which the weakness progresses, is different from person to person.
While some people can live a long time with MND, the average life expectancy is 27 months. MND is fatal. It has no cure, no known cause, and no effective treatment. Some forms of MND tend to run in families, however, over 90% of patients have no family history at all. I have no family history of neurological disorders and have always been a fit, healthy, and active Mum.
No matter how old or how fit a person is, this disease does not discriminate. It is a crippling illness that results in profound muscle weakness which, in my case, initially started in my hands and has spread to my arms. The condition will progress to the extent that I can’t walk or use my arms, and eventually it will take away my ability to talk, swallow and breathe. MND has been nicknamed “The Beast”, due to its insidious and relentless nature.
My symptoms first began in mid-2021 when I noticed my right hand occasionally locking in strange positions which I had to shake out. Over time, I noticed that everyday tasks were becoming harder due to loss of grip strength (e.g., opening jars, cutting food, carrying my old dog up the stairs). However, life was hectic and full. I was a working Mum and busy organising my belated wedding celebration with Andrew, delayed due to COVID. Eventually I noticed that lifting my arms was becoming a struggle and I needed to ask Andrew or Judd to assist me to put on my jackets. Even tasks such as brushing my hair were becoming tiring.
I then noticed the same trajectory of weakness starting in my left hand. While we were fairly sure it was something simple and fixable, like repetitive strain injury (RSI) or carpal-tunnel syndrome, Andrew, who is Neuropsychiatrist, was concerned enough to find a good Neurologist to run some tests.
It was a complete and utter shock to us both, the day that the Neurologist, after completing a series of nerve conduction tests and Electromyography (EMG), turned to face us and uttered the three letters that would change our lives forever: MND.
The moment ran like this:
After pulling out the needle from the last muscle test, the Neurologist sat down next to me (Andrew on my other side) and said, ‘It is not carpel tunnel’. I replied, ‘well that’s not good’ to which she responded, ‘yes I too was hoping it would be carpel tunnel’.
She then gave a sigh in a dark, depressing tone and dropped her head.
It was at this moment I knew that bad news was coming and, in an attempt, to ease her burden of delivery I responded, “It is bad, isn’t it?”
“Yes,” she said. “It is very bad [pause]; you have MND - Motor Neurone Disease.”
She then explained the diagnosis of “ALS” (amyotrophic lateral sclerosis), which is a type of MND. She explained that there is no cure, a very short life-expectancy, and that the future involved profound disability.
In disbelief, I asked, “How will I die? What will the end look like?”
She replied, “Your body will become progressively weaker over time, from the outside towards the centre, impacting on swallowing and speech and eventually your lungs will no longer be able to support your breathing.”
This was followed by: “I am writing you a referral to a specialist support and Palliative Care Service.”
There are no words to explain how to comprehend this news. In the same moment I was hearing the Neurologist urging me to travel to whatever destination I had always dreamt of, and to create my bucket list, because “Your time is now; there is no tomorrow.”
No amount of psychological training and years of experience could have prepared me to look my 11-year-old son in the eyes and tell him that “Mum is very sick.”
And then to have him ask, “But, you will be okay, right?”
And to have to reply, “No, I’m sorry Judd. Mum isn’t going to be okay. Mum can’t get better from this.”
“What do you mean, Mum?” Tears well up in his eyes and he reaches for me with his soft little hand to hold mine.
A parent is supposed to be able to tell their children that everything will be okay, everything can be fixed. I wanted to protect him but was forced to reply:
“I’m so sorry, Judd, but Mum is dying.”
Then, a guttural whisper between tear-filled eyes, “No, Mum.”
Belinda and Andrew's Wedding Day | Katherine Gorge, Northern Territory | 11th April 2021
The weeks that follow, the phase in which we currently remain, are a blur and an impossible-to-process overload of emotions. Grief. Loss. Existential terror. Andrew and I support one another and Judd and provide as much of a happy home and normality as can be done, while having to deliver the news and manage the shock and grief of friends and family. How do you tell your Mum and Dad that you are dying, knowing the utter grief they will experience from the incomprehensible reverse natural order of death?
There is practical future planning such as wills, power of attorneys, making plans to move to a wheelchair accessible home, as well as medical appointments and allied health specialists coming on board. Amongst this, I have had the amazing support of MND Victoria who are the only not-for-profit organisation providing direct care and support to Victorians living with motor neurone disease.
The one fundamental issue that I have found the most challenging in dealing with MND is the fact that, whilst the time I have available is finite, the length I have left is ultimately unknown. No doctor can advise or predict the progression rate of decline. I do not know how much quality or independent time I have. Twelve months? Twenty-four months? Five years, or beyond? Will I still be able to walk in three months time? Or will I have one more year of ambulation freedom? How much time do I have left for the ability to speak, to express to Judd all my hopes and dreams for him? If I book opera tickets for January 2023, do I book a wheelchair seat, or will I still be walking?
The happy, joyful moments are now tainted by grief. Will this be the last time I can play basketball with Judd? Is this the last time I will be able to dance with Andrew? I experience incredibly deep sadness about all the things I’ll miss out on: Judd’s graduation; holding my potential grandchildren of Judd and my two stepchildren; enjoying years of love and the rewards of retirement and celebration of life into twilight years with Andrew; the privilege of caring for my parents into their old age as a thank you for the wonderful life they have given me. And the worry about how my son will manage without me to guide him.
I catch myself staring at my beautiful young son who has filled my life with such meaning, purpose and the deepest experience of joy and love, trying to imagine what his face will look like as a young man. Will he know that I will be proud of the man he will become no matter what mistakes and falls he makes along the way. That I hope my death will not be a shadow over his life in which he creates an unattainable yard stick ‘Have I done well enough for my Mum, would Mum be proud of me?’ Instead, I hope I will represent a shining light through his life to provide nurturance and an enduring sense of unconditional love as he develops into his own independent strong being. I would be cheering him on to make great life choices, but that ultimately any stumbles along his journey are his to make and grow from – that he is accountable to himself rather than carrying a heavy ghost of me on his back perpetually judging him. I wish I could be there to hold his hand and lift him up when the inevitable adversities of life knock him down. But I know he will have the strength to rise back up because I can see that he has great character already, with Andrew as his guide, alongside our support crew to wrap their arms around him on my behalf.
Belinda and Andrew's Wedding Day | Katherine Gorge, Northern Territory | 11th April 2021
There is the terror about what is yet-to-come, and about leaving behind a trail of palpable grief and pain by my passing as a mother, wife, daughter, sister, and friend. There is also the task of redefining myself and my identity: coming to terms with the ending of my fulfilling and rewarding 16-year career as a psychologist. I must try to re-invent myself as someone with an active brain yet limited moving body parts. I am aware of losing the pleasure and satisfaction of my care-giver role to my son and husband (driving, cooking meals, washing clothes).
I am being stripped of everything I have control over, and slowly being left with just the essence of Me.
As a fellow MND battler has described, it feels as if we are running two parallel races at the same time. One is the task orientated race—an attempt to control and to put things in place for the future of my family as best as I can. The other race is mindful living – ‘Today is my best me’. I am determined to live my best life and to make the most of life each day because each tomorrow will be a little harder as I grow weaker, and so I am called to live fully today. I am planning fun times with friends and family and soaking up meaning and joy in my life. Life is all the more precious for its brevity.
We are holding each other tight as we ride the waves of despair and terror that is the storm of MND. However, throughout this difficult journey, we also bear witness to the great depth of human compassion and kindness. We have been uplifted by the love, care and support of what I call the “layers of my onion”—my family, friends and the wider community around us.
I have the most amazing, caring husband cradling me in his heart and arms. I feel so tremendously blessed to have found a depth of love, connection and understanding with Andrew that transcends the concept of love that I had imagined only existed in dreams. He is walking this journey with me hand in hand. I have a gorgeous, thoughtful son, so funny, compassionate, and warm. Each holding my hand through each step of the way and over each hurdle. I have witnessed with admiration my 11-year-old quietly (without any awareness that anyone is watching) lift himself up with such astounding natural strength and unbeknownst inner resilience to face a new world carrying a weight on his shoulders with such grace and courage. Without prompts, he carries my shopping bags and holds my hand as I walk up and down stairs in case of a unexpected fall. I have been blessed with unexpected glimpses into my son’s beautiful nature. For example, four days post diagnosis, I went to use his iPad and saw his google search history. The previous searches were all game or sport related (‘AFL fixtures and results’, etc). These changed abruptly with the more recent heart wrenching search terms like, ‘how to best spend the last 1 to 2 years of your life’.
I have loving family, friends, and a great bunch of work colleagues. We have seen an unwavering offer of support and compassion from not only friends and family but from people I have only just met. There has been the development of invaluable friendships that might otherwise not have been born or solidified without this situation, such as the support and camaraderie of other mothers within Judd’s wonderful school community. The show of support and countless messages of encouragement have hoisted us up, lifted our spirits and given us the strength to face this dreadful disease head-on. Whilst this disease is horrible it has elicited in others the best aspects of human nature.
Unfortunately, a cure won’t be found in my lifetime, but I am grateful for the support of MND Victoria who provide vital care, support, education and equipment to families such as ourselves. We have been tremendously impressed by the kindness and professionalism provided to us by MND Victoria and it has been an invaluable comfort to have their care and support during this chapter of our lives.
Thanks for taking the time to learn about our journey, and about MND.
Belinda and her "Fan Base" are taking part in The Great MND Relay this 23 - 25 June 2022. So far, they've raised an incredible $27,579.00. We are very grateful to Belinda for all she is doing to raise awareness and funds - you're a superstar!