From Hairdryers to Heartbreak: A Hairdresser's MND Battle
Debbie Whitehouse looked down at the whirring hair dryer in her hand, completely bewildered. As an experienced hairdresser, she had spent decades styling and cutting hair, but suddenly her right arm felt so weak she couldn't hold the lightweight device up for even a moment longer. The familiar tool now felt as heavy as lead.
At first, the 55-year-old thought she might have slept in an awkward position or was simply experiencing normal signs of ageing. But deep down, she knew something was seriously wrong. This wasn't the first warning sign she had experienced - the troubling symptoms had actually begun six months earlier when she struggled to push herself out of the bath.
The Frightening Journey to Diagnosis
Debbie had been gradually finding it difficult to hold her hair dryer for extended periods, and on one occasion, a colleague noticed her arm twitching uncontrollably. She dismissed these episodes, attributing them to stress, her age, or possibly menopause. The reality hit home when her speech began to slur on that same fateful day she couldn't hold her hair dryer.
Fear began to creep in as she researched her symptoms online. The first search result mentioned Stephen Hawking, and that was when true dread settled in her heart. Too terrified to tell anyone except her best friend, she waited a few days before ringing her GP on August 22, 2021, to discuss vertigo symptoms. Her doctor immediately instructed her to call 999, suspecting she was having a stroke.
What followed was six months of exhaustive tests including blood work, MRIs, lumbar punctures, and various scans. The medical journey included several misdiagnoses - first menopause, then a stroke, then multiple sclerosis. Finally, in September 2022, a neurologist delivered the devastating news: 'You have motor neurone disease'.
Living With MND's Brutal Reality
Debbie learned the harsh statistics: 50% of people with MND die within three years, and 90% within ten years. There is no cure and nothing to slow the disease's progression. Her first thought was of her three grown children - as a single mother, she had always been their rock and support system. The terrifying prospect of leaving them to face life without her became overwhelming.
Three years after her diagnosis, Debbie considers herself among the 'lucky' ones who have survived this long, but she feels herself deteriorating daily. Her arms are now completely paralysed, her fingers are curling, and she cannot lift her head without assistance. Her torso and neck continue to lose strength, and she can no longer stand independently.
The disease has robbed her of basic independence - she can no longer dress herself, cook for herself, or even get out of bed without help. Her lung strength has diminished to 50%, forcing her to rely on a breathing machine at night. She chokes every time she eats and recently underwent surgery for a PEG feeding tube as swallowing will eventually become impossible.
What breaks her heart most is anticipating the day her voice will disappear, leaving her unable to express herself or tell her family she loves them. The thought of her children caring for her in ways she never imagined is particularly painful for a mother who has always been their protector.
Raising Awareness Through MND QUEENS
When people learn about her condition, they often mistakenly assume she has MS, demonstrating how little understanding exists about MND and its brutal nature. Debbie knows eight other women hairdressers with MND within her social circle alone. These women - daughters, mothers, friends, and wives - feel forgotten in the fight against MND, believing too much focus surrounds men, particularly elite sportsmen.
Determined to make a difference after her diagnosis, Debbie started MND QUEENS, a Facebook support group for women affected by motor neurone disease. The group provides a platform for women to support each other, discussing MND care, menopause, treatment equipment, families, accessibility, mental health, and more. They've even created their own t-shirts to build community spirit.
She has also collaborated with the MND Association on their #teammnda campaign while fundraising for research and advocacy. Though the association has provided significant support since her diagnosis, it remains critically underfunded.
Debbie shares her story not for sympathy but to raise awareness, ensuring her children know she fought to find a cure. She emphasizes that nobody should have to endure watching their body deteriorate piece by piece. The more people understand what this disease does to individuals and families, the more funding can be raised to eventually find a cure.
Debbie Whitehouse vows to fight to the end for everyone living with motor neurone disease, determined that fewer people should ever have to hear those devastating words: 'You have MND'.
