Claire Cunnington

“You have Motor Neurone Disease” he said. I stared at the doctor then looked down at my bump. I was eight months pregnant. Why was this happening now? Why was this happening to me?

“You have Motor Neurone Disease” he said. I stared at the doctor then looked down at my bump. I was eight months pregnant. Why was this happening now? Why was this happening to me?

Alt text The doctors thought it was hay fever at first because I constantly sounded like I had a blocked nose, so I, like everyone else brushed it off as a cold.

It was my feet that went next. I kept on getting cramp and my left foot appeared to move slower than the rest of my body, I knew leg cramps were common in pregnancy but boy was I suffering.

I did a bit of research and I read that a hot bath before bed and gentle exercises should help, so religiously every evening I was there, doing circles with my ankles and flexing my feet up and down. It was then that I noticed that my left foot moved slower than my right no matter how hard I tried to control it. Whilst pushing my one year old son in the pushchair one day, I noticed that I couldn't keep the flip flop on my left foot and it just kept on falling off as I walked.

It wasn’t until I was singing ‘Twinkle Twinkle Little Star’ to my middle child, who was just a baby at the time, that I noticed my left hand wasn’t moving as fast as the right that I knew something really was up. As I opened and closed my fingers to show the twinkling star, my left hand moved slower than my right.

I thought it was a brain tumour. I knew it was serious but in my mind but I wasn’t really worried, especially because I was so young; I mean, I was 37 at the time. I thought it would be treatable and I thought I would be able to get through whatever challenge lay ahead. I never even considered it would be this. I never thought it was Motor Neurone Disease.

The hay fever diagnosis was dismissed and the doctor referred me for tests. I was pregnant with my third child and my midwife was keen to find out what it was before I gave birth; just to save any complications that could potentially happen. Four days after the test, I was given the results.

I remember my first visit to LOROS for the MND clinic. I walked in pushing my four month old and now two year old boys in the double pushchair with Alan, my husband, and the ladies on reception presumed we were visiting a relative. But no I was now a LOROS patient. No one can imagine what it feels like. No one can imagine what I’m going through.

The MNDA volunteers and MND specialist nurses gave us a very warm welcome and obviously adored seeing the boys as not many MND patients have babies. I loved showing my boys off and I proudly displayed a photo of my daughter on my phone but as I did so, my eyes welled with tears feeling a strange mixture of emotions building inside of pride, happiness, bewilderment, despair, disbelief and grief.

I’m 41 now and I’m in a powered wheelchair full-time. I guess I’m one of the lucky ones because it’s affecting me really gradually. I know there are others that have been affected more severely than me over a faster period of time, which I can imagine would be totally overwhelming. It’s slowly getting worse mind.

Two of my children were so young when I was diagnosed, they don’t know me to be any different. My eldest does though. She’s 12 and I can tell she finds it hard, she doesn’t really say much. Our lives have been completely turned upside down since my diagnosis. Alan, my husband no longer works as an engineer he is now my full-time carer and takes care of the children. And, after 17 years working as a prison officer, I was forced to retire early.

I struggle with the simplest tasks that we all take for granted like pulling up my trousers, holding my knife and fork, undoing lids on containers, doing up my zip and anything that involves a gripping motion. I try to grip but instantly get severe cramp in my fingers and thumbs which pulls my fingers and hands inwards shooting pain right up to my elbows. I can't get out of bed, stand up or walk without someone else physically moving my body for me, but the hardest and worst thing for me is my body not being able to express how I feel inside. The only way I can describe it is like your body is drunk but in your head, you are completely sober. I feel like I have a normal person’s head in a complete stranger’s body. I wanted to walk normally but I couldn't and that’s meant lots of falls. I'd start to talk but my mouth and tongue wouldn't keep up with what I was thinking and my voice was slurred again as if I was drunk.

I sometimes wake up in the morning and forget because I’m not in any pain; I forget what I’m going through, then I try and speak and I remember. Oh yeah, I have MND. What can you do though? Nothing, you just have to come to terms with it and cope as best you can.

My biggest blessing is still being able to smile, although I can't smile and talk at the same time. I can't really laugh - I mean a real belly laugh – and I’ve become fearful of crying or laughing too hard as I just can't breathe as all of my chest muscles seem to tighten and don't release. I literally choke on my tears.

I’ve asked so many questions since being diagnosed. I tried to figure out if I had done something that might’ve triggered it but you soon accept you can’t think about it too much or else you could drive yourself seriously mad.

It took me two years to finally ‘mingle’ with other MND patients. I was scared and I looked at others who were worse off and feared that could be me.

Then I started coming to the MND patients support group which meets at LOROS and it was one of the best things I did. I started to speak to others who are feeling and thinking the same as me. We shared stories, experiences and compared symptoms. I then began to learn that everyone with MND is affected differently and all of a sudden, I wasn’t as frightened of the physical symptoms anymore.

Our monthly meetings are now a highlight of my calendar and I look forward to seeing everyone, catching up and supporting others through our individual journeys. We decided to form our own Facebook group which means we can contact and support each other any time or day.

I no longer attend hospital for any treatment or care, LOROS does it all through their amazing team. The Hospice has become my second home, my children even know their way around. I know when I’m at LOROS I’m fine and that brings me great comfort and reassurance.

The services they have provided for me have kept my mind positive and helped me to come to terms with living my life with MND the best I can. As well as helping me to address the difficult subject of how to face the future and what it will bring, I use the full range of outpatient services, including complementary therapy where I have massages; hypnotherapy which help me to relax and stay calm; counselling; and one to one appointments with a palliative care consultant or MND specialist nurse.

Day Therapy brings a welcome break from days sat at home, bored. I don’t go out as much as I used to. It’s hard to be social these days because people get so impatient waiting for me to communicate. I either use an app on my iPad to help me talk, or I try and speak but that’s getting harder for people to understand. And people don’t give me time to finish and by the time I’ve got out what I want to say, the conversation has moved on. It’s so frustrating.

My every need is catered for by the staff at LOROS though and I've met some lovely people in similar situations to myself. We have lots of banter throughout the day which often reminds me of the joys of my previous working environment.

I’ve now gone beyond being scared of MND. I used to have panic attacks thinking about what the future held for me potentially living trapped inside my own body and the end of life itself, but with support I feel like I’ve come to terms with living with this disease.