Mum died of MND a month after her diagnosis – I've found out I have it too
‘I’m so sorry but your mum has motor neurone disease.’
No matter how much you have researched symptoms or suspect a condition, nothing can quite prepare you for those words. Not for a disease as cruel and terrifying as MND. They knock you sideways, leave you struggling to make sense of them.
Back in June 2022, when Mum received her diagnosis, I was crushed. Knowing what was to come, with no hope in sight, well, I didn’t think I could feel any worse.
I had no idea that I would not only lose my beloved mum within weeks but that within three months, I would receive the same distressing diagnosis too.
I’d always been really close to my mum, Jacqueline Newall. She and Dad lived just round the corner from me and I’d meet her for lunch or a coffee. She was just a really lovely, kind-hearted woman.
Although she was always laughing, Mum always took her health seriously. She never smoked or drank, always took her vitamins, ate healthy foods and exercised regularly. Even when she hit her 70s, she’d never admit her age, always telling people she was 35 with a cheeky wink.
So when she began falling while out on walks in October 2021, we were all shocked – and worried. And that wasn’t all. Before long, she was struggling to open lids on jars, or to pick up the kettle.
As I googled her symptoms, Parkinson’s kept coming up, as well as MND. ‘But it couldn’t be motor neurone disease,’ I told myself. ‘It’s too rare.’
Plus, I knew about the condition and had learnt more since reading up on Mum’s symptoms, where the motor neurone cells that transported messages from your brain to your muscles stopped working, leaving you unable to move your arms, legs, and eventually even swallow and breathe. It sounded like your worst nightmare. It couldn’t be that.
Eventually, she hurt her back in a fall and ended up in hospital. It was then she was tested for motor neurone disease and given her diagnosis.
By that point, it was too late to do anything. Two weeks later, she was moved to a hospice and put on an end-of-life pathway. I cannot tell you how devastating it was to watch her decline, pieces of her falling away every day.
And when she passed away on 17 July 2022, I was left reeling.
Stumbling around in my grief, I tried to carry on with everyday life – going to work, to the gym.
But just three months later, I was cooking dinner when I realised I couldn’t lift the pan with my left arm. It wasn’t that my arm was sore, it just wasn’t doing what I wanted it to. ‘I must have strained a muscle at the gym,’ I thought, brushing it off.
But soon, it was notably weaker than my right arm. I tried focusing on it at the gym but after six weeks, it was worse, not better.
I also started to notice tremors under my skin, almost like a trapped nerve pulsing away. Again, it didn’t hurt, but I couldn’t control it either.
A cold fear crept up inside of me.
But when I voiced my worries that I could have MND to my husband, John, and my friends, they told me not to be silly, that it couldn’t be that. At first, I wondered if they were right, if it was the trauma from Mum’s death, making me paranoid about my own health.
As my symptoms failed to clear up, I made an appointment with my doctor.
She agreed with my concerns, especially because of the lack of pain. But it would be 17 weeks before I could get a referral on the NHS – and Mum had already passed away in that time.
I spoke to John and we decided to book an appointment with a private neurologist. ‘I have good news,’ he told me after an MRI scan. ‘Your results are clear.’
But it wasn’t good news – motor neurone disease didn’t show up on scans like that. The fact that there was nothing else there only terrified me more.
‘But if it isn’t that, what could it be?’ my husband John asked desperately. But the consultant shook their head. ‘There is nothing else,’ he said.
Eventually, it was a nerve conduction test that confirmed in January 2023 that I too had MND.
Going home, John and I couldn’t stop crying. I was only 51. How could this be happening to me? Especially so soon after Mum?
But soon, I realised if I didn’t have long left, I didn’t want to waste it.
‘What do you want to do?’ John asked me. The answer was easy – after spending most of my career working as cabin manager for Thomas Cook, travelling was in my blood. So we booked up to go on two holidays straight away, to Tenerife and Fuerteventura.
It was so lovely, sitting in the sun, people-watching. Although my diagnosis never left me, I was grateful for the distraction.
However, by the time we came home, I was struggling to walk.
Now, I can only get around in a mobility scooter and have to sleep in a hospital bed. I am unable to use my left hand at all, so John has to cut up my food for me.
I know I am dying, and that it probably won’t be long. Motor neurone disease kills a third of people within a year of diagnosis, half within two years. I’m not scared of that, not anymore. Although, I know at the end, the only thing I will be able to move are my eyes. I’m not looking forward to that bit.
I do worry though, for John, for my twin 22-year-old girls, Olivia and Georgia. I wish more than anything I’d be able to see them settled, meet my grandchildren, know that they were going to be OK.
But I can’t change that. This is the hand I’ve been dealt and it’s the hand I have to deal with.
I’m seeing a neurologist to see if I’m suitable for a new tablet, which may slow down my symptoms, give me longer with my loved ones. But there are no guarantees, so I’m not relying on that.
Instead, I’m using my time left to raise awareness of this awful, awful condition. Although six people are diagnosed with it every day, six people die with it every day and around 5,000 people are living with it at any one time, it’s amazing how many people don’t know about it.
So I want people to know that if you start to develop a weakness in your muscles, or you can’t do things you used to be able to, please go and see your GP. It might not be MND, but if it is, it’s vital to get the care and support you need as soon as possible.
Please, pass on this message and talk to your friends and family if you’re not feeling right. For me, and my mum.
For more information, visit www.mndassociation.org
As told to Sarah Whiteley
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