My granddad first started showing symptoms of motor neurone disease (MND) in about 1999.
He’d always been an energetic man. A boxer and a diver during his time in the Royal Navy, a strong swimmer, keen gardener and golfer in later years. But as a family we noticed him start to show symptoms of something that none of us had seen before.
The doctors seemed baffled too. First they thought asthma, then cancer, then after two years he was finally diagnosed with Progressive Bulbar Palsy (PBP) – a type of MND – just a week before he died. We’d never heard of MND before. He must have been living with it, undiagnosed, for about three years.
MND or ALS – remember the Ice Bucket Challenge!? – can be classified into four main types depending on the pattern of motor neurone involvement and the part of the body where the symptoms begin: Amyotrophic Lateral Sclerosis (ALS), Progressive Bulbar Palsy (PBP), Progressive Muscular Atrophy (PMA) and Primary Lateral Sclerosis (PLS). They all affect people differently and at different speeds.
In layman’s terms, the disease paralyses you. In my granddad’s case, he was paralysed from the inside out. Starting with his diaphragm – the big muscle that helps us breathe – other types of MND cause people to initially lose strength in their limbs, and then it spreads.
When we all realised that the disease was terminal we were all obviously devastated. As well as being my granddad, he was also one of the kindest, most generous, loving, wise men on the planet.
In short, he was awesome. The thought of not having him around was unbearable for all of us. Fifteen years later I still think about him every single day.
The hardest thing was watching him disappear before our eyes. He went very quickly from being a vibrant, strong man in his mid-60s to someone unrecognisable. A man who couldn’t hold his own head up or shut his own jaw. He couldn’t chew or swallow and completely lost the power of speech. He hated the indignity of it all. Unlike with other forms of MND, my granddad was still able to use his hands, arms and legs – although with greatly reduced strength – pretty much until the end.
I asked him once if the disease hurt. He replied by writing on a piece of paper. It read, “Only in here.” He then placed his hands on his head and his heart.
He went on to describe being in a prison. Trapped in his own body without being able to communicate properly. Feeling hugely frustrated that his brain was as astute as it ever was but being unable to show it. Hungry but unable to eat. Breathless but unable to take in a lung full of air. People in the street staring because of his physical deterioration or people accusing him of being drunk because of his slurred speech.
Watching someone you love dying is awful no matter what the disease or circumstance. But MND is cruel. It’s an evil disease. There’s no known cause and no cure. It can strike at any time, young and old alike, and it can take a person very, very quickly. That is why it’s so important to support the only national charity supporting people with MND, their families and carers in England Wales and Northern Ireland focused on care, research and campaigning.
Trying to keep him and us in good spirits was hard. He was very much a family man so we all spent as much time with him as we could.
Anything to keep his mind off of things. I’d sit in his living room playing the piano and singing for him – a thing he’d loved and encouraged me to do since I was small.
But a constant steady flow of loving family seemed to quiet his mind a little. If he’d have had more time, I’m sure we would have sought help from the Motor Neurone Disease Association. It’s an incredible charity that does amazing things to help people and their families who’re affected by MND.
They help with everything from funding for things like chair lifts and wheelchairs, to emotional support – and, of course, research to try to find a cure.
In the 14 years I’ve been working with the charity I’m endlessly impressed by how hard it works and for the amazing things it does. The charity receives no government funding so it also work tirelessly to keep money coming in.
At present there is no cure for MND. Once that diagnosis is given you have weeks, months or at best a few years to live. The only advice I can give to anyone who has a loved one with motor neurone disease is to cherish every second – every single second – you have left with them.
For more information about MND and the Association please visit mndassociation.org and facebook.com/mndassociation. You can also follow the MND Association on Twitter at @mndassoc or follow Dan on Twitter at @dan_brocklebank.