Barry Skelton and Jo Briley,Living with Motor Neuron Disease

Hi

I have worked in the exhibition industry from the age of 16. That was 33 years ago over that time I met and worked with hundreds of people not just in the UK. My job took me loads of places around the world, and unlike most people's jobs I loved it.

Due to sceptic people i have been advised to add my diagnosis letter

In December of 2022 I proposed to my now fiance Jo on holiday in Tenerife. Life was looking good, until march of 2023 when i noticed a problem with my left leg.

After months of tests and countless hospital trips I was unable to continue working. Mentally my life fell apart after years of being able to work help and support everyone around me. To not be able to drive, walk, or work to earn money and pay bills and now being looked after by Jo. She did not sign up for this !!

But has been truly amazing.

Last October(2023) I was diagnosed with Motor Neuron Disease/ALS, which was a horrendous shock for me and my family. So I am now planning to fit the 30+ years of life I should have left into 2 or 3

MND/ALS is a terminal illness. There is no cure and currently no effective treatments

A lot of research is being done now to find a cure and treatments, but the clinical trial process is lengthy, and experimental treatments provide no guarantee of a magic silver bullet.

MND can take your life within months. Some people manage to live with MND for a few years.

All people who have the condition will experience muscle function loss from onset, until they cannot breathe sufficiently, and life ends. So I want to make the best with what time I have left....

We have been extremely lucky to be offered a house with a ground floor bedroom and wet room. Jo is working full time as a teacher and is keeping our heads above water. But in reality we simply can't afford to carpet and furnish this large property and overgrown garden. As my condition gets worse there will be more changes needed.

We also would love to get married and go on a memorable honeymoon before it's too late.

Its not my nature to ask for help so this is very hard for me.

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