Originally Posted December 16th, 2017
I’d like to tell you a story about a friend of mine.
In May 2007, she was walking down the street with her sister in Queensway, west London, when she suddenly lost the power in her left leg, and fell to the pavement. She was fine, albeit a little shaken by this strange turn of events, and soon put the incident behind her.
That was, of course, until the same thing happened a second time some weeks later. And then a third time. And then a fourth…
My friend didn’t know it yet – indeed, it would take several nerve-wracking months, GP appointments, Neurology reviews, and an MRI scan of her spine until the diagnosis was finally confirmed – but she was experiencing the early symptoms of the progressive, incurable condition called Motor Neurone Disease (MND).
Everybody knows Professor Stephen Hawking, arguably the most well-known sufferer of MND. What many people may not realise, however, is that his story is anything but typical. The fact that he is still alive, despite having lived with MND for over five decades, is something that continues to baffle medical experts – for sadly, in most cases, the life expectancy for patients with MND is just 2-3 years.
Before long, the progressive weakness in my friend’s left leg spread to her right leg too – and that meant first having to learn to walk with crutches, and later being confined to a wheelchair. Soon enough, the weakness spread to her arms as well. Not long after, her voice began to strain, until she could no longer talk. The weakness in her arms meant that she eventually wasn’t able to write either, resulting in her ultimately becoming dependant on an electronic, button click activated ‘light writer’ to communicate. Around the same time, she lost the ability to safely eat and drink, which necessitated the insertion of a feeding tube. In short, my friend slowly, but inexorably, became a prisoner within her own body, though her mind remained as sharp and alert as ever.
Then, on 27th December 2010, the inevitable happened. Typically, the last of the body’s muscles to weaken in MND are those of the chest, and it was only ever going to be a matter of time before the same cruel fate befell my friend. Without warning, she suddenly collapsed at home, having developed either a mucus plug or a blood clot in her lungs (we never found out which), and soon slipped into a coma; 8 days later, she passed away, more than 3 and a half years after that fateful day – and seemingly innocuous fall – in London.
Why, you may ask, am I telling you all this sad tale? Well, that’s simple: you see, the friend whose story this is was my mother.
I’ve thought a lot in recent weeks and months about whether to share my Mum’s story with you. For one thing, I didn’t want to unintentionally upset any members of my family by causing them to relive what happened. For another, I am very keen (as was she) that my Mum never simply be defined by the illness that ultimately took her from us all too soon. She had a wonderful life, and was well-loved, hugely admired, and immensely respected not just as a mother, but also as a daughter, wife, sister, aunt, friend, and Doctor – and even that barely scratches the surface. My Mum had 60 great years which I know that she valued and cherished, and would not want to solely be remembered for her last 3.
As some of you who follow my Facebook feed will know, this year would’ve marked my Mum’s 70th birthday. Over the Summer, it was my honour and privilege to be able to gift a Science trophy to my old primary school that was dedicated to my Mum; she was always a champion of education (and the Sciences in particular), and so it seemed like a fitting gesture. But I’d like to do more.
You may have heard in the news last week about the recent breakthrough that offers hope for sufferers of Huntington’s Disease, another devastating, progressive – and presently incurable – Neurological illness. I look forward to the day when I turn on the news, and hear that a similar breakthrough has been made for patients with MND, so that future sufferers need not go through the same experience as my Mum.
I hold my hands up and admit that I’m not someone who donates to charity as much as I probably should. I’m also fully aware that any given cause sadly (but perhaps inevitably) typically has a finite shelf life. However, I was astounded to learn that the 2014 ice bucket challenge (designed to raise awareness of ALS, which is a form of MND) raised a staggering 115 million dollars; some of that money, in turn, helped fund research at the University of Massachusetts, which ultimately led to the discovery of a gene that’s been implicated in causing the inherited form of MND. I can only hope that that’s just the beginning.
If you’ve read this, and think that MND may be a cause you would consider donating a little of your hard-earned cash to, then I humbly direct your attention to the following two organisations:
· The Motor Neurone Disease Association (https://www.mndassociation.org).
· The King’s College London Neuroscience Department (https://www.kcl.ac.uk/kingsanswers/give/donate-index.aspx) – my alma mater, which is currently doing pioneering work looking at Neurological conditions, including MND.
Thank you for reading, and wishing you all a wonderful festive period.
Ramy’s World 