Hi, my names Andy and I was diagnosed with Primary Progressive Multiple Sclerosis (PPMS) back in early 2024 at 56 years old. I spent much of my life working on the Railways and latterly, in Local Government.
Once I had got over the initial shock of diagnosis, I began researching MS and looked for what support was available in North Somerset.
Who could I talk to? Was there anybody else out there in the same position? Who could advise me on what living with MS really meant?
There was nothing. It appeared that the local MS Society Group had folded during COVID and nothing had replaced it?
I wanted to be proactive, to be positive, to find a way of living with MS from others who had already trod that road, but instead, I felt lonely, isolated and like I was the only person with MS in the whole of the county! Nothing wrong with a bit of melodrama!
Obviously, that wasn’t true, and I estimated that there was probably around 400 people living with MS in North Somerset and maybe 40 or 50 with PPMS. Where was everybody?
So, for that reason, I began thinking about how people with MS, their friends, family and carers could get together and create a community, a voice. Could people get together, provide support for each other?
Hence, NORMS (North Somerset Multiple Sclerosis) was born. I had no idea if anyone was interested or perhaps everyone wanted to keep themselves to themselves?
Because MS is such a peculiarly individual illness, it seemed that sharing that story with others would be beneficial, with others who ‘got it’ and understood what it was like, a connection, a smile, a friendly hello maybe a coffee or a pint, a ‘roll out’ along the prom, an art class, seated yoga……
It’s still early days and NORMS has yet to find its feet but we're thinking big.
Let’s face it, having MS ‘aint no fun, but maybe we could make it a little bit better, together. No one should fight this alone.
So, that’s our story…. to be continued……….