Widow of John Croxford, who lost his life to Motor Neurone Disease in 2022 gives us a personal glimpse of what it is like to live with someone with this cruel and fatal disease.
I am grateful to have been offered this platform to act as one of the voices for the brave warriors, who are struggling with motor neurone disease (MND) and its devastating effects.
One of these warriors was my husband, my rock, my soul mate who lost the battle against MND in July 2022, having progressed mainly during the lockdown. I am now a campaigner for The Motor Neurone Disease Association to raise as much awareness as possible and make sure the people affected are treated with the dignity they deserve.
What is Motor Neurone Disease?
MND is a progressive and fatal disease caused by degeneration of motor neurones or nerves in the brain and spinal cord gradually stopping messages getting through to the muscles to function.
· 5000 adults in the UK are affected at any one time
· There is a 1 in 300 lifetime risk of developing MND
· 6 people are diagnosed daily in the UK and 6 people die of the disease every day.
· There is no cure yet
· The average life expectancy from the time of diagnosis is 2-5 years on AVERAGE, but varies. A third of people die within a year of diagnosis and 50% within two years. Some live as short as 6 months and a few live longer
· The only hope today is research and the future!
It can affect any age, race or gender. We are seeing the brave rugby and football players, fit and healthy individuals and many others who are also fighting MND whilst raising funds for research and care. They are heroes and warriors and do not consider themselves victims. All the campaigning has led to the government promising a generous amount for research and that money is now being filtered through to the researchers who are working to develop treatments and ultimately a cure.
An alert mind trapped in a body which gradually cannot move, talk, swallow or in the end breathe due to the respiratory muscles' weakness and failure. Diagnosis can be a lengthy process and often by the process of elimination. It took over a year for my husband to be diagnosed after MND had been ruled out initially.
What are the early symptoms of motor neurone disease?
Symptoms, severity and speed of progress vary in each person
Weakness in the ankle or leg causing tripping (as in my husband’s case)
Weakness in the hand and grip
Slurred speech and change in voice quality
Tongue movements and swallowing
Cramps and rippling in the muscles
In some cases cognitive changes too
As the disease progresses and nerve cells are destroyed, swallowing, chewing, speaking and breathing become affected. Excessive daytime fatigue and breathlessness are very debilitating.
What is the cause of MND?
There are no obvious causes as yet, but genetics, environment and lifestyles are considered.
A personal glimpse of what it is like to live with someone with MND
To hear the doctor’s diagnosis was absolutely shattering, it was almost like a life sentence being handed out! The feeling of numbness and hopelessness was overwhelming; my main concern was how was my husband going to deal with this? How can anyone live with the knowledge that there is no hope or cure? For my part, I later found out that it is possible because it has to be! I had to reach deep within me to find the strength especially during lockdown when people were worried about infecting my husband. Soon I realised it was vital to find ways of recharging my depleted energy so that I might continue giving care. Sink or swim and I decided to swim! Falling apart was not an option or helpful to anyone.
Nature is a great healer; cooking, music; I even learnt to write a few poems and learnt to start playing the keyboard on WhatsApp from a lady in Derbyshire. Thanks to technology that kept me in touch with the world, even yoga class on Zoom. I have always enjoyed having candles and flowers in the house to create a cosy environment, perhaps due to spending most of my life working in hospitals.
My husband was a realistic Yorkshire man, calm mannered, creative (sculpted, painted and wrote a few books), a book worm who loved history and world affairs (later audio books) and a good sense of humour, even in times of sadness and tears he would say something funny to brighten up the atmosphere, which all gave me courage to continue looking after him as best I could. The enormity of the task, the physical and emotional impact kept coming into my consciousness; even my background of physiotherapy had not prepared me for this.
The downward steps into the abyss continued and later moved faster. Realising he was losing his voice when one day he tried to hum to a tune, he had a lovely voice! His right hand and grip were his last bit of independence left and he was dreading losing that too, but it did happen as it always does with this cruel disease.
Caring for someone with Motor Neurone Disease
MND requires a multidisciplinary team of therapists, counsellors and palliative care staff, assisted technology to provide some independence, voice banking for communication. As just about most parts of the body are affected, it is so important that there is a fast track in place to put plans into action.
The private medical insurance dropped my husband as soon as he was diagnosed because MND is a progressive and chronic disease. The same with the private care company, they could not provide the level of care eventually due to shortage of staff, so we were grateful to be able to have NHS access and support.
Even in means tested or affluent areas where most people are happy to pay for adaptations and care, there are those who are struggling and need assistance. The councils can play a large role (they are given a disabilities budget) and some are more equipped to deal with MND than others in giving patients the support they need. For example, the provision of adaptations such as ramps and handrails, in-home and in public spaces which would benefit people with disabilities and prevent hospitalisations for accidents and falls. The added financial burden of care and other needs can be overwhelming if people are not familiar with the protocols and applications or just too proud to ask for help.
The MND Association does an amazing job and can also help in many ways such as education, support, campaigns to deliver a maximised quality of life to those fighting MND and their carers.
The big dream is a day without MND in the world!
If you would like to find out more about Motor Neurone Disease and how you can help raise awareness and much needed funds for research please contact The Motor Neurone Disease Association.
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