Debbie Whitehouse looked down at the hair dryer whirring in her hand, utterly bewildered. As a professional hairdresser, wielding styling tools was second nature. Yet, on that day, her right arm felt so feeble she could no longer keep the lightweight dryer aloft. It was a moment of profound realisation that something was deeply wrong.
The Slow Creep of Unseen Symptoms
The initial weakness in August 2021 was not an isolated incident. Debbie, then 55, had noticed troubling signs for about six months. Simple tasks like pushing herself out of the bath had become a struggle. Her arm would occasionally twitch, a fact a colleague had pointed out. She dismissed these episodes, attributing them to stress, age, or the menopause.
The true alarm sounded later that same day when her speech began to slur. Fear took hold. An online search of her symptoms brought up the name Stephen Hawking, and a deep dread settled in her heart. After confiding only in her best friend, she contacted her GP a few days later, mentioning vertigo. The doctor's response was immediate and stark: call 999, you are having a stroke.
A Devastating Diagnosis After Months of Uncertainty
What followed was a gruelling six-month marathon of hospital tests, including MRIs, scans, and a lumbar puncture. The path to an answer was fraught with misdirection. Medical professionals first suggested menopause, then a stroke, then multiple sclerosis. Finally, in September 2022, a neurologist delivered the life-shattering news: 'You have motor neurone disease'.
She was informed of the brutal statistics: 50% of people with MND die within three years, and 90% within ten. There is no cure, and no treatment to slow its relentless progression. Her first thought was for her three grown children. "I'm a single mum and I've always been their rock," she said. "I was terrified of leaving them to face life without me."
Life with MND and a Mission to Raise Awareness
Now, three years after her first symptoms, Debbie describes herself as one of the 'lucky' ones to have survived this long, but her condition deteriorates daily. Her arms are completely paralysed, her fingers are curling, and she cannot lift her head unaided. Her torso and neck are weakening, and standing alone is impossible.
Her lung capacity has halved, forcing her to use a breathing machine at night. Eating causes choking, leading to a recent operation for a PEG feeding tube. The prospect of losing her voice is a daily dread, fearing she will be unable to tell her family she loves them.
Debbie has noticed a worrying pattern, knowing eight other women hairdressers within her social circle who also have MND. She feels women are being forgotten in the narrative, which often focuses on men, particularly elite sportsmen. In response, she founded a Facebook support group named MND QUEENS for women affected by the disease, covering topics from care and menopause to mental health.
She also works with the MND Association on campaigns and fundraising, highlighting that the charity remains significantly underfunded. Debbie writes not for sympathy, but to raise crucial awareness and funding for research. "No one should ever have to hear those words: 'You have MND'," she states. "I will fight to the end for people living with this disease."
