A Personal Tragedy: Confronting Motor Neurone Disease
The neurologist's words landed with devastating finality: "I am really sorry because you are a young man and this is a life limiting condition." In October 2024, at just 51 years old, my husband Andrew received a diagnosis of motor neurone disease (MND), a progressive neurological condition that attacks the brain and spinal cord, leading to muscle weakness, gradual paralysis, and ultimately respiratory failure.
The Crushing Reality of Diagnosis
The diagnosis felt surreal. We had been reassured during a previous appointment that MND was unlikely. Andrew was fit and healthy - surely he could survive this. The doctor's first advice was "Don't look up the life expectancy," which of course we immediately ignored. Discovering that MND patients typically live two to three years with no cure was our introduction to the brutal reality we would face.
Andrew fought courageously against this relentless disease, but he passed away on November 29, 2025, just thirteen months after his initial diagnosis. Our family endured an indescribably difficult period, which made reading about actor Eric Dane's death from ALS (a form of MND) particularly heartbreaking. Dane died only ten months after his diagnosis, and I know all too well what his family is experiencing right now.
The Rapid Progression of MND
Our journey began in July 2024 when Andrew noticed muscle twitching in his limbs. Within weeks, the spasms spread throughout his entire body. Initially, we tried not to catastrophize, though we knew MND was among the possible explanations. Facing months-long NHS waiting lists while his symptoms worsened, Andrew opted for a private consultation where he was told MND seemed unlikely since he showed no signs of Bulbar Palsy, which affects tongue function.
However, his October 2024 NHS appointment delivered the crushing truth: Andrew had MND and the prognosis was terminal. Despite trying to remain positive, we immediately encountered barriers. By July 2025, Andrew required a breathing machine 24/7, was almost completely tube-fed, and had only 20% use of one hand due to near-total paralysis. The speed of progression, common among MND patients, shocked us despite medical warnings.
Family Impact and Financial Strain
We delayed telling our two children as long as possible, inventing excuses like "Daddy has a lot of work" when Andrew could no longer join family walks. Eventually, we gathered them on the sofa where Andrew explained his weakening ankle was part of a larger problem. Our daughter asked, "But what would be the point of life without you?" while our son, displaying practical concern, inquired how this would affect Daddy's salary - a moment that brought both laughter and difficult explanations.
MND isn't just a health crisis; it's a life crisis that upends every aspect of existence, including finances. As an NHS consultant psychiatrist, Andrew provided our primary income. Upon diagnosis, he was advised to retire immediately rather than take sick leave. I left my guitar teaching position to become his full-time caregiver. Initially, his life insurance refused payment, absurdly claiming he might recover from this incurable disease before eventually relenting.
Understanding Motor Neurone Disease
Motor neurone disease is an uncommon condition affecting the brain and nerves, typically striking people in their 60s and 70s but capable of affecting adults of all ages. The disease involves deteriorating motor neurons that gradually impair movement, swallowing, and breathing. While not usually hereditary, having a close relative with MND can increase risk.
Early symptoms include:
- Weakness in ankles or legs causing tripping or stair-climbing difficulty
- Slurred speech progressing to swallowing problems
- Weak grip leading to dropped objects or difficulty with buttons
- Muscle cramps and twitches
- Unintended weight loss and muscle thinning
- Inappropriate crying or laughing episodes
The NHS recommends consulting a GP if these symptoms appear, noting that while MND is unlikely, early diagnosis ensures proper care and support.
The Search for Treatment and Systemic Failures
We received mixed support from charities. Our local hospice provided excellent palliative care preparation, and an MND charity granted funds for a family holiday. However, the broader system fails MND patients. With only about 5,000 people living with MND in the UK at any given time, patients often feel invisible, vulnerable, and essentially abandoned.
What's desperately needed is precision medicine and RNA therapy, which can control, edit, or replace genetic information to treat diseases by regulating protein expression and correcting genetic mutations that cause MND. Genetic testing can identify known causes, and treatments can be developed within six months in the United States.
We collaborated with US biotech firms and UK teams to develop precision medication targeting protein imbalance, potentially offering a smoother, cheaper, more effective approach for MND sufferers. Tragically, Andrew died two months before his medication could be completed. By the time we discovered the treatment company in August 2025, it was far too late.
A Call for Action and Awareness
Like Eric Dane, who used his platform to campaign for MND awareness before his death, we must break the taboo surrounding this disease. No family should endure what ours has, or what Eric Dane's family is currently experiencing. We need accelerated research, better support systems, and ultimately a cure.
Our family is coping as well as possible - I've returned to work, and our children are doing their best. We often dream of a time when Andrew might have become ill after treatments became available. The fight against MND requires urgency, compassion, and substantial investment so that future families might have more time than we were granted.
