The Centre has become the first port of call for Patrick a husband and a father of three, now in his sixties, who once travelled the world as an international computer programmer. It is providing him with the one-to-one physiotherapy that keeps him on his feet, and the social interaction he lost along with his job and his mobility. Patrick says it’s helped him cope with his MS in the same way you would eat an elephant – just one mouthful at a time. This is Patrick’s story.
I was diagnosed with MS within six months of seeing a neurologist, which was really quick in those days. But life continued – I was married with three young children, and had a busy job. MS was there in the background, and I just carried on.
Over time I became an international freelance computer programmer and I loved it. I saw the world. But then the MS got worse. It changed from relapsing remitting MS to secondary progressive MS. This meant that when symptoms started up, they didn’t get better.
My bladder problems got worse, I got foot drop, my double-vision became more frequent and I became more fatigued. I kept working but my contracts became shorter and worth less.
I’d always agreed with my wife that I’d work until I couldn’t do it anymore. I was still trying to work with my mobility scooter, and struggling with serious fatigue and loss of energy, but eventually we just agreed – that was it – I’d retire. Medical retirement is pretty mind-blowing. Everything you exist for is suddenly gone. The office life, the chats over the water fountain. People value you. You have a position in society and within the family. It’s suddenly just ripped away.
I was transformed into someone living on benefits. I felt like a ‘reject’. Society is not very good with someone who wants to work but doesn’t have the capability. I couldn’t drive so that knocked a lot of things on the head. I worked in back-office banking which is very specialised. You can’t do it from home, and although I tried to transfer to other types of programming, nothing worked out.
Now I’m quite disabled. I can’t walk unaided. I can’t stand in the middle of the room and put a coat on. I can’t bend down and pick up a piece of paper from the floor because I’d just fall over. I have to get dressed sitting on the bed.
Life with MS is hard. But it’s happened gradually. It’s accelerated over the last 10-12 years – but overall it’s been a slow and gradual journey that you go through.
It’s like having a mild form of dementia. My memory is now very bad, my cognition is bad. When I talk to my wife it takes a while for me to process the questions she asks me. She can see the cogs turning. My speech is a bit slurred, especially when I’m tired. My vision’s not very good. My wife is my carer. I don’t need to be got dressed or put myself to bed – I can do all that myself – but I need someone around as a security. I do fall over. I do stupid things. And it makes me stressed and upset at times.
Over the years I’ve become a regular at the Centre – but an irregular regular. At the moment I’m getting neurological physio, and it’s like having private physio. They’re brilliant, and they don’t say no to you. The physio is helping to keep me on my feet.
I don’t think people really understand what an amazing place it is. These are highly trained health specialists giving one-to-one care. It’s like having a private doctor on tap. I do the exercises I’m giving because I know they’re helping me keep the MS at bay.
The Centre is a way to engage with people and build up a relationship with truly amazing people there. They’ve helped me sort out my benefit payments – which is a complete nightmare – for me they are the first port of call if I have any problems.
It’s always a battle to remain positive, to have goals. But you need goals to see you through each day. I always think about the question, ‘how do you eat an elephant?’ The answer is, ‘one mouthful at a time’. That’s how I look at my MS.
Patrick has raised thousands of pounds for the Centre over the years with his many walking challenges. If you would like to help many people with MS, like Patrick, to continue to do some of life’s simple things and remain as independent as possible, please make a donation this MS Awareness Week.