Motor neuron disease has been in the spotlight since brave rugby star Rob Burrow shared his emotional struggle with the world.
In a stadium of 10,000 people, 33 will get MND in their lifetime. The degenerative and dramatically life-shortening disease is one our author Kirsten Jones knows all too well.
Kirsten’s nightmare began when her mother, Mandy, was diagnosed when she was just 59…
“Mum’s walker rolls slowly down the hospital corridor, the sound of her deep breathing echoing loudly as she drags her failing body into the specialist’s office.
He leans forward into the thick silence and utters the words we’ve been dreading: “I’m so sorry to tell you that you have motor neuron disease.” In five little seconds our whole world collapses.
When Mom was diagnosed with MND in January 2020, we thought we had time to accept it and adjust, make peace and move on. The truth is, Mum wasn’t on her side this time. Six months after the diagnosis, she escaped.
I remember asking on my birthday in July 2019, “Mom, why are you tapping your feet when you walk?”
She shrugged happily and said, “I’m just tired — the age!” She was only 58 and by no means an old woman — she walked miles every day and had a social calendar that rivaled a Hollywood celebrity could.
Then, weeks later, she couldn’t put her shoes on or unscrew a glass. “It’s okay, don’t worry about me,” she smiled.
But she knew what was going on. A talented nurse, Mum saw the signs of motor neuron disease but didn’t want to believe it.
MND is a progressive and severely life-shortening disease that affects one in 300 people. It blocks messages from the brain from reaching muscles, causing them to weaken, stiffen, and atrophy. As the disease progresses, it can affect your ability to walk, talk, eat, drink, and eventually breathe.
Most people think of Stephen Hawking living 55 years after his diagnosis, but that is very rare. Some people live 10 years or more with slow deterioration. Others, like Mum, get trapped in their bodies and lose their fight in less than a year.
It was Mom’s first question when the specialist made his devastating diagnosis. “How long?” she sobbed. He just didn’t know.
I was stunned for days watching my strong mom collapse as she broke the news to friends and family. I’d only seen her cry twice so far, but that was just the beginning.
Mom and I were best friends and shared everything. She took me on a fun vacation by the sea while Dad worked hard at home. My parents separated in 2008, so we were particularly close, spending happy weekends together shopping, playing scrabble and fixing the world on long walks in the country.
After her diagnosis, Mum forced me to return to London, to my normal life, but I couldn’t stop worrying about her. We talked on the phone every day and cried when we said goodbye. I cuddled my boyfriend, felt helpless trying to keep up with my stressful job, and resented impending layoffs while desperate to be with Mum.
Then came the lockdown. In March 2020, with the country in hiding from Covid, I hired the last available car in London and drove 160 miles north to look after my mum.
“I don’t know what I would have done without you,” she cried. In the two short months since her diagnosis, her voice had become slurred, she could not walk, and she could barely use her hands.
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Before her symptoms started, Mum was a special school nurse – loved and respected by everyone who knew her. Mum was devoted to these children and she wouldn’t have it any other way.
Just a few months after her retirement, she realized that one day she too would become as dependent and helpless as these children. Some people are able to accept their illness and the knowledge that they are going to die. But Mama’s illness was the cruellest of all atrocities and progressed at a rate none of us expected. And it changed her more than I ever thought she could change.
As the weeks went by, my childhood home became a hub for 24-hour caregivers and traveling doctors.
Stuck in bed, deprived of her voice and body, Mum screamed like I had never heard anyone scream before. That sound will haunt me forever. She transformed from an amazing, independent woman who helped everyone in her life to a sobbing shell of who she was.
We were together 24/7, doing mundane tasks we all take for granted like going to the bathroom, stretching our legs, and drinking coffee. At night I lay awake as Marie Curie nurses came and went and gave Mum another shot of morphine to ease her pain. I appeared next to her bed one night as she gestured to the nurses, “Just kill me.”
It was a living nightmare, but we weren’t alone. My godmother Jeanette and my aunt Kate put their lives on hold for Mum and their friends and colleagues have taken care of them and shown us how much they love them.
Mum was drugged high – synthetic morphine and enough tranquilizers to knock an elephant unconscious. But despite her failing body, Mum struggled for months. I have never seen her so scared and desperate and those memories will stay with me for the rest of my life.
At first Mom hid her illness from me, her family and friends, even the professionals, until she couldn’t hide it anymore. But now it was too late for interventions to help her eat and drink. Too late for a gaze machine to help her communicate. i miss her voice I don’t remember it right now, but I hope I’ll do it in time.
I look back and realize how scared she was of any device or dose of medication that might have made her life that little bit easier. For her it was another piece of independence that was mercilessly taken from her.
I’m not sure which is worse, slowly marching to the end or losing your skills without a moment of notice. Could you accept the reality that you die too soon? It’s a thought that haunts me every day. Finally, it is not known if MND is genetic and there is nothing I can do if it is. There is no treatment and no cure.
In July 2020 the nurses sent me home to London to rest. I was scared and exhausted. I had no time to eat and little time to sleep. I couldn’t face the thought of Mum dying without me, but the nurses assured me they would call if things went downhill for her.
Days later the phone rang. “Kirsten, it’s time,” a nurse said softly.
I jumped in the car and got to Mum’s house to find her limp in her bed. Her eyes widened as I held her hand. I smiled at her and said, “I’m not going anywhere.”
Mum persevered and slept soundly for two more weeks. Then, on July 23, 2020, at 5:20 p.m., she breathed her last. I held her hand to my cheek as the color drained from her skin and whispered, “You are so loved.”
We had come to the end of Mum’s fight against MND. And it really was a struggle.
The next day was my 29th birthday. But the house was silent, eerie and dark. “Have a drink,” Mom’s friends asked. “She would want you to party.” But it didn’t feel right, it never will.
Mama’s funeral flew by. I stood by her coffin and shared my favorite stories while her loved ones watched via video link (the pandemic put an end to big funerals). A year later, everyone gathered for a real party to celebrate their lives. We spent the night dancing, singing and sharing our fondest memories.
It’s been almost two years since mum passed and I can’t believe she’s gone. I’ve struggled to cope without siblings to share the loss but I’m fortunate to have amazing friends and mom’s family to pick me up and remember the good times.
I’ve also tackled many “firsts”. Two months later, on Mother’s 60th birthday, I climbed Mam Tor in the Peak District and imagined her walking beside me. This Christmas, during lockdown, I hung her handmade crochet balls on our tree.
Every day there are things I want to say to her and then I remember that she’s not here. This feeling of loss doesn’t get any easier, but I’m grateful for the time we had together.
Mum donated her brain to science hoping it would help find a cure. I hope that one day her dream will come true so that no one has to suffer like her.”