I have SPMS but it does not define me

 

Hi there, I’m Patrick I’ve had MS for over 45 years. For the first 20 odd years it just lurked in the background keeping a very low profile. A brief flirtation with double vision led to my diagnosis in 1995. Five years later I noticed little problems that would not go away. I realised I could not walk in a straight line and sometimes I did a face plant. That was just the beginning.

 

A Quick intro

In 2012 medical retirement grabbed me and now MS has just got bigger and bigger. A wheelchair is in the garden shed but while I can sort of walk it stays there. I’m very unsteady on my feet, I have to use a walker and progress is depressingly slow. I can’t drive but I have a pretty nifty mobility scooter nicknamed The Trike. This has been a life changer and has given me a superb quality of life.

 

A few days ago

I was having a chat with a friend who does not have MS. He said “I have heard people talking about social capital and social prescribing. I don’t really know what they mean, do you?”
 
“Umm, not really”, I said. “I know it’s nothing to do with money, it’s not measurable and I think it’s all connected with your quality of life”.
 
A couple of days later I attended a meeting discussing Social Capital and Social Prescribing. Afterwards I did a bit of Googling. I now have a much better idea of what it all means. Just out of interest I typed ‘social capital’ into Google and I got this definition.
 
‘The networks of relationships among people who live and work in a particular society, enabling that society to function effectively’.
 
I think that is both woolly and pompous. Instead here are my thoughts. Social capital is a concept or idea. Your group of ‘best’ friends make your world a good and happy place to live in. We each make our own social capital and then it is easier to enjoy life, do the things that are rewarding and bring you pleasure.
 
Each person is unique therefore their social capital is going to be unique. My best friend will have social capital but his is different from mine.
 

A brief history

The last 15 years of my working life was spent as a computer contractor. I was working all over the world and I enjoyed living in different cultures. I worked overseas for the last 12 years of my working life but usually home at the weekends and it was difficult to form new friendships. On top of that I would change contracts approximately every 15 months so new workplace.
 
Medical retirement arrived in 2012 because of MS, it was a huge game changer for me. I soon realised I would have to make my own social capital from scratch. I have managed this despite the limitations imposed upon my life because of advanced multiple sclerosis.
 

Improving my social capital

I now lead a full and busy life but getting there was hard work. The Wife and I try to go to the theatre or museums in London at least once a month and both of us enjoy food. Now there is just one thing, I want my own friends rather than being friendly with The Wife’s friends. I am slowly getting there, however as you get older it becomes more difficult to turn acquaintances into friends.
 

Our modern lives are surprisingly isolating

Apparently the West is becoming wealthier but the sense of community in this space is withering. For example there are people who are not disabled, have a computer and do everything using the internet. They do all their work online, do their shopping online and only interact with other people through their computers using social media. That is their choice but I think it must be a lonely life.
 
Also let’s not forget about the people who are skint or lonely or out of work or even just elderly and probably don’t have access to the Internet in the house. Potentially this could be you with progressive MS. These people can easily go for over 24 hours not talking to another soul. Their social capital must be very small.
 

Solutions?

Social capital is about communicating with people socially, building up connections, relationships and trust. I am very lucky; the small town where I live is rich in social capital. Even so there are people in this town with a wide range of social needs that cannot be fixed through a medical prescription. So a route to improving their mental well-being and physical health is necessary. In fact these people are everywhere.
 
I looked at my own transferable skills and built up my own social capital but it was not easy. An alternative solution is social prescribing or community referral. This is giving GPs, nurses and other primary care professionals the opportunity to refer people to a range of local non-clinical services.
 
Was I lucky or did I create my own luck or social prescription? Not everyone is like me, thank goodness. Neither of these ideas are new but there so many people who need more social capital ocial prescribing to get there.
 

Just take a moment

Please think about two things. What is your most socially rewarding activity and what new social activity would you really like? Enrich the first and try to build the second. Sorting out my social capital helps me to live with the ups and downs of my MS. Don’t let MS be in pole position of your life.
 

 

Patrick

 

I was diagnosed with MS in the last century and medical retirement was thrown at me in January 2012, it was a shocking event. Since that momentous day I have built the website www.aid4disabled.com , give talks to nursing students on Long-Term Conditions and I have my finger in all sorts of pies. I get around using a funky mobility scooter because I cannot walk unaided, cooking when I have the energy and talking to the plants in my garden.

 

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