Lived experience

In 2018, I found I was falling over a lot so I went to my GP who referred me to the Falls Clinic. They did an MRI scan and found lesions on my spine, which pointed to Multiple Sclerosis.

At the time I had a successful career. I moved into advertising after working in broadcasting. But as my MS began to progress, I was no longer able to work and the business I had built fell apart.

We came to the North West to be with my partner’s family, turning to them for help to give our children a stable home environment. I was diagnosed soon after my daughter was born, 3 months after, the first girl after 2 boys was born.

I was living in Travelodge’s and Premier Inns when we came up North but when the first Covid lockdown happened they shut down and I found myself homeless and on the streets.

I was put into sheltered accommodation by the local council which wasn’t a great environment for me and certainly wasn’t an environment where I could spend any time with my children. The accommodation was set up for people who had just got out of Prison and had nowhere to live so I wasn’t living with the best. I was given my first wheelchair then as I was using walking sticks and was really struggling to walk and have any control over my body.

The lesions on my spinal cord are stopping signals from my brain go through to the rest of my body. It’s amazing when you think about how much of your body the brain controls. Although most of my body is not working, I find much of my brain very much still is. I can still think the way I always have even though I can’t communicate it the way I used to be able to. I’m an intelligent, well read, well educated man and because I can still think the way I used to, I still am.

After applying for any social housing I could, I was eventually able to find a wheelchair-adapted home I could live in. Somewhere I could spend time with my children and we could once again be a family. Somewhere I could build a home for myself. Somewhere adapted to my needs as someone who very quickly became disabled and a fraction of the person I used to be.

I have always been self-sufficient, I was the main breadwinner in my family, I fed them and clothed them, housed them all, took my eldest to 4 out of 7 continents on holiday. I was able to do many things I am not able to anymore. I found myself needing more and more support.

I have never been someone who finds it easy to turn to others for help. Nobody expects to get ill. I certainly didn’t. There is nothing I did which caused Multiple Sclerosis. It just happens to some people. I have the worst kind of Multiple Sclerosis. Primary Progressive. Only 10% of people with MS will have this. The key word for me there is ‘Progressive’. I will never get better, just progressively worse. So, to have support is really important for me. Not for my physical well-being but for my mental well-being as my brain is the only bit still working. I need that support.

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People may call MS a Brain Disease but I see it more as a spinal cord disease. My brain is working fine, it just can’t communicate it to the rest of my body.

Somebody on another thread on this forum suggested something called futurelearn and I have been doing short courses on there, run by University’s which has helped my brain remain active.

I am trying to stay as active as I can as long as I can