When MND impacts you every day, it is easy to forget that some people are unaware of what it is. It’s easy to fall into the trap that Stephen Hawking and Ronnie Corbett and The Theory of Everything were enough to give people an idea about MND – what it is and how it impacts people.
It’s easy to think raising awareness is less important than raising money.
In my old job, everyone I immediately worked with had an idea what MND was, because they’d looked it up after I’d received the news – they were there when I found out. In my new job, I have had to do a bit more explaining.
I was stood by the kettle, having a chat with one of my new colleagues. I have a few holiday days next week, and she was asking if I was doing anything nice. I am – I am spending five days with Mum, celebrating her birthday.
She didn’t know much about motor neurone disease, so I talked her through what it is and how it impacts people. When explaining it for the first time, I tend to keep it as simple as possible – I don’t go into the complexities of different types of MND.
‘How did it start?’ she asked.
I think it is natural for people to wonder. They want to know the signs. It is a rare disease, but with six people diagnosed every day, it could happen to someone they know, if not themselves. If only there was a simple answer to that question, though.
I had to explain how difficult it is to diagnose – why it took four months from the onset of symptoms and two months from the first GP visit to finally be told she has PBP.
‘It started with her speech,’ I told her. ‘Her speech was slurred around Christmas time. We thought she was just a bit tipsy! We didn’t believe her when she said she hadn’t touched a drop.’
Adding a bit of humour can ease some of the pressures on what can be a dark conversation, especially when you’re talking to someone you’ve just met, but will be working closely with for the foreseeable future.
Of course, you then have to stress that that isn’t the only sign. I know people for whom losing grip was their first symptom, or stumbling and losing balance. That’s why it is so important to see a GP if you think there is something wrong – the chances are it’s minor, not something to worry about. But even being on the GP’s radar is a good start to managing any disease – including MND.
Then there’s the inevitable question. ‘What causes it?’
I am yet to meet someone who isn’t shocked when I explain how little we know about MND. We don’t know what the trigger is for starting the deterioration. The best research has accomplished so far is a drug to prolong life by up to six months. There is so more we need to do. For other diseases, raising awareness is about knowing the signs, or living healthier lifestyles – what you can do to prevent disease, and how to fight it. For us, so much of what we do is raising awareness about our own limited awareness. We live with the consequences of this disease every day, but are plagued by unanswered questions, which we endeavour to solve.
Raising awareness benefits people with MND, their family, friends and carers – but also society as a whole. We strive to be a more understanding and considerate society which supports the needs of people who have fallen on hard times. Understanding what MND is, how it impacts people and how we can make life a little bit easier for them, is to some people more important than the search for a cure.
‘You must have been dealing with this for a while,’ my new colleague told me. She was shocked when I said ‘she was diagnosed in April’. So much hits you all at once, and we’re only just starting to feel on top of it all, like we in any way understand. For me, talking about it is the key.
So this MND Global Awareness Day – get involved! Go to the MND Association’s social media pages, share your thoughts, keep talking, keep shouting and keep celebrating life, even one with the dark shadow of MND.
Because it will still be here tomorrow. And people will still be struggling when MND Awareness Month comes to an end.