The wife of a man grappling with motor neurone disease has characterized his diagnosis as the “darkest days” of their lives. Mark Williams, residing in Abertillery, received the diagnosis 18 months ago, prompted by symptoms like slurred speech and muscle twitching associated with the debilitating condition.
Motor neurone disease (MND) affects the brain and nerves, presenting challenges for which there is currently no cure. Mark, a 39-year-old father of two and former child therapist, relied heavily on his ability to communicate in his profession. His wife, Steph, recounts the moment when his speech began to change, leading them to seek medical advice.
Initially misdiagnosed with acid reflux laryngitis, Mark suspected a deeper issue. Despite inquiries about alcohol consumption due to his altered speech, Mark persisted. A physiotherapist noticed changes in his reflexes, prompting an expedited private MRI scan, which confirmed MND.
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The nine-month period between initial symptoms and diagnosis was emotionally grueling for Mark, who grappled with the prospect of a terminal illness. Steph reflects on the impact on their family dynamics as Mark, the breadwinner and planner, faced an uncertain future.
Upon receiving the diagnosis, Mark channeled his energy into fundraising for Doddie Aid, established in honor of former Scotland rugby international Doddie Weir, who succumbed to MND at 52. Mark also engaged in voice banking, recording phrases with his own voice for use with speech-generating communication devices.
Despite the challenges, Mark’s commitment to Doddie Aid resulted in raising over £4m for MND research. Last year, he completed a remarkable 700 miles on his exercise bike for the foundation and aims to achieve another 200 miles this month.
As Mark’s condition progressed, Steph transitioned from her work to become a full-time caregiver for her husband. She acknowledges the mental and physical strain but remains resolute, taking inspiration from Mark and their children. Steph describes herself as the driving force, the glue holding the family together, and finds motivation to persevere by focusing on the positive aspects of their future.