Emma B

When I was first asked by Challenging MND to write about my story I jumped (well obviously not literally) at the chance but turns out reliving the process was harder than I thought.

My story started in August of 2020, I was 37, mum of 2, just brought a house and working full time for a local domestic abuse charity, life was full and busy but was happy and healthy and bar having the children hadn’t had any dealings with the NHS. I started to notice my right hand cramping, it would lock in a weird position for 30seconds about once a week, I didn’t think anything of it and ignored it. Eventually it got to the stage of happening 5 or 6 times a day so went to the GP, was referred to Neurologist and a diagnosis of dystonia was given. This seemed to fit and I took medication for the cramps. Without me really registering my walking was starting to get dodgy and I remember trying to walk over some rocks at the beach and just not being able to get my balance to do it, we laughed it off and carried on. The wobbliness and falls did get worse, and the cramps spread to my legs and I was referred back to the Neurologist who changed my diagnosis to functional neurological disorder (FND), I was told the stress of my job and some apparent undiagnosed trauma was causing the brain to stop my body working. The next 18 months were brutal, I underwent hours and hours of CBT and psychotherapy trying to locate what my brain was supposedly grumpy about, as well as intense clinical trials. All this time I was getting far worse physically, unable to walk more than few steps, crawling from the sofa to the toilet, taking over an hour of painful body distortion to get upstairs. My life become very small as unable to do things an being told using walking aids was feeding the issue by health team, I stopped going out, driving and reduced work hours.

For my 40th birthday my friend set up a go fund me page to get my the funds to try a private neuro rehab in Leeds. Within the 1st day of seeing me they questioned the diagnosis of FND and referred me back to Neurologist. Within 3 weeks I had nerve conduction and EMG tests for the first time and on the 20th July was given the devastating news it was MND – only one letter different in diagnosis but completely different prognosis.

Although MND was the worst possible outcome it briefly gave me a quality of life back. I stopped doubting my body and blaming myself, I got a wheelchair and stairlift and was able to live a different version of life than I had done for last year. The day after I told my boyfriend we got the wheelchair and headed to the beach at 6am to see the sunrise – because we now could and realised we needed to go grab life. It was bittersweet moment.

I’ve done so much in the last 6 months, made special memory days with the children, spent quality time with dear friends, went on the holiday of a lifetime to the Maldives (thanks to Challenging MND’s generous grant) and just had a YODO party which was an amazing evening filled with love and celebration. As well as days spent sobbing at how unjust it feels, anger, heartbreak when thinking of not seeing the children grow up. It’s a rollercoaster that me and all my friends and family are on, no one wants to be and we all know life will never be the same when it stops.

MND is really starting to take over now. I need support with daily tasks, eating and talking take way more effort and I don’t recognise my body anymore with the muscle wastage. I feel like I’m looking in on my own life a lot of the time and that MND is the big ball from Indiana Jones that’s constantly on my tail.

But when faced with my imminent death at 40 I looked back to see what I regretted not doing and I didn’t want to change a thing. I wished I had spent less time on diets and ate more cake, kissed a few less frogs and been kinder to myself at times but other than that it’s been a life well lived. I now plan on spending the rest of my time squeezing and loving all those important to me, keeping my humour up and trying to educate others and raise awareness of this arse of a disease