Getting a handle on MS can be hard enough when you live with it yourself. But it can often be just as tricky for children and young people to understand why their mum or dad is too tired to play or why they might have to help out more at home.
The young person’s guide to MS is one of our most popular publications and aims to give some answers. It was inspired by a series of workshops organised by Kerry Mutch to help young people learn more about the condition and to explore their feelings about living with MS in their family. Below we hear from one girl who benefited from these sessions.
OK, I did need to be persuaded by mum to go to a study day about MS. Most of the time I pretend everything is OK and I’m not worried, although I get a bit mad when I can’t go out because I have to tidy up or something. Sometimes, when I’m on my own, I worry if mum’s going to get worse or die. But it wasn’t hard to choose between missing drama at school and having a day out.
When I arrived I was very nervous as I didn’t know what to expect and I didn’t know anybody. I needn’t have worried. There were about 20 others and everyone was very friendly. First we went into three teams and played a game that showed us how nerves pass messages and how different things can go wrong.
It was great to meet other children like me. I learned a lot and am not as frightened of MS as I was.
The next bit was the most fun. In our teams we went to three different sessions on memory and word finding, bladder and visual problems and sensory and motor problems. We did different activities and we learned how they related to problems in MS.
My favourite was the three-legged course where we learned how hard it can be to walk if you have MS. Me and my partner crashed into a wall! Then we had to open a packet of sweets with one hand. This was also tricky but we got to eat the sweets. The hardest exercise was trying to remember all the details of a story we were told. This was to show how MS can affect your memory. We were given some hints to help make it easier, like writing things down.
After lunch we stayed in smaller groups and were told a story about a girl called Emma whose dad has MS. This gave us a chance to think about both Emma and her dad’s feelings. I don’t often think about how my mum feels. I now realise that she may also feel guilty when I can’t go out.
Finally, we had a question and answer session. I found out that I probably won’t get MS and my mum won’t die of her MS. There’s no cure for MS, so she will always have it, but there are some treatments that may be able to help her.
Then it was home time. I’m glad I came to the MS in the family day. It was great to meet other children like me. I learned a lot and I’m not as frightened of MS as I was.
Digesting Science is a new website which helps children understand more about their parent’s MS. It was produced by interaction designer Alison Thomson as part of her work with the Neuroimmunology Group at Queen Mary, University of London. Here she introduces some of the features of the site.
The idea for Digesting Science came from my masters project – using food to make difficult ideas a bit smaller so you can ‘get’ them. This was a public engagement project, but the MS team I worked with saw a need in the clinic: we weren’t addressing the children of people with MS. So the idea for Digesting Science was twofold: helping parents let their children know what MS is. But also helping the children themselves understand what their own chances of developing MS are.
We developed a Saturday morning course where children of people with MS could come along with their parents to our MS centre. They met the scientists and got to go around and do all the different activities that are featured in videos on the website. We were very aware that we’re lucky to have a research team attached to the MS centre where we are in London, so we thought we should develop a website so people across the country can do these activities at home.
To read more about Alison’s work visit www.somehowrelated.co.uk.