Barry Skelton and Jo Briley,Living with Motor Neuron Disease

After working non stop since the age of 16, I began suffering from severe cramps, muscle twitching and fatigue back in July 2022. I firstly put this down to getting older and / or covid related but my girlfriend insisted I get this checked out. My girlfriend and I got engaged on NYE 2022/23 in the presence of her two teenage daughters and life was looking great.

After a year and half of invasive testing for everything under the sun I was given the devastating news of being diagnosed with Motor Neurone Disease (MND) in October 2023.

MND is a rare condition affecting the brain and nerves, causing muscle weakness, twitches, slurred speech, and difficulty swallowing. It occurs when motor neurones in the brain and nerves gradually stop working, leading to devastating consequences. Life expectancy is approximately 2-5 years.

I tried really hard to continue working following my diagnosis but it just became impossible and dangerous especially as my profession was in the building trade. I struggled to stand and fell over numerous times. I couldn’t drive anymore and had to for the first time in my life turn to the government for financial assistance. Which as you can imagine is barely enough to live off. Let alone there being any money for any extras.

My condition is life limiting and I am only 50. I was hoping to marry my partner and experience and make many memories with her and my stepdaughters. She works hard and is also my main carer.

We obviously can’t afford any holidays nor do we have extra money for creating any memories. However, one of the things we would like to do is complete our garden. I have done so much on my own already but have got to a point where I simply can’t do anything else. I am now completely wheelchair bound, unable to stand and my arms are weakening. I am solely reliant on others which is something I have never been before now which makes even asking for your help really hard. I have been accepted for a grant from the local council however I have been told this could take over a year before someone makes first contact let alone how much longer it will take for them to actually do the work. Without sounding morbid with MND you just don’t know how long you have left.

The garden being completed will be for us to enjoy all year round and allow us to make as many memories as we can in it. Have family and friends around and maybe even get married in it.

I have attached my diagnosis letter as well as photos of where the garden started from and the point I am up to now.

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