BY MITCH COLES
Last week, Jon and I travelled to Helen House in Oxford, where we met with Youth and Transition Worker Emma Jordan and a group of 17 and 18-year-olds with Duchenne. After almost running out of fuel on the way, I made it on time (I was actually early!), even if I did get lost in the garden. We were welcomed by Emma with open arms and given the grand tour of the old Douglas House, which sadly had to close last year due to funding. Luckily, the space is currently still able to be used for their Social Saturday events that run every other month.
Before long we were invited to lunch, which I found out was actually brunch. Just for the record, brunch is one of my all-time favourite meals. So I was quite happy with that, but obviously we didn’t just travel to Oxford for that. It was a great opportunity to sit down with Emma and the lads, have a chat and get to know one another. We talked about gaming and sports such as the Rugby World Cup and football; there was a bit of a Man United / Man City showdown going on, but no hard feelings. After brunch it was time for the most important thing, it was time for our short, sharp presentations about a number of topics. We introduced ourselves and DMD Pathfinders and played our Who Are DMD Pathfinders video. We then talked about socialising, relationships, staying healthy and volunteering / work.
It’s easy to feel socially isolated, especially as we get older and leave college and university. These can be very social times and it becomes more difficult to make friends after this. This is why you need to make the most of meeting new people and embrace any hobbies you have even if you think it’s a weird hobby, there are people out there with the same interests as you. It is important to keep up good relationships with everyone around you, it’s not all about finding a partner or starting a family. Some people want this, that’s fine too, just remember kindness does go a long way in building successful relationships and try and smile when you can because you never know when you might make a new friend.
This can also help with volunteering and work opportunities, with a decent attitude and if you work hard, you can achieve your goals. Jon and I detailed our journeys to finding employment. It’s about realising your limitations and realising that you might have to try that bit extra to get to where you want to be. The most important of all is without a doubt making sure you stay healthy. Because without your health it’s not possible to be social, or build relationships and be able to go to work. This is about keeping on top of all your clinics that need to be attended for example cardiology, respiratory and any other appointments you may need to attend. It’s your body, you should know it better than anyone, so if you can recognise when you’re not feeling yourself you should take action. Because if you act early, often you have a head start on the road to getting better. This doesn’t just apply to physical ailments, you also have to be feeling well mentally. Just as you would talk to someone about your physical health, don’t forget that it’s ok to talk about the way your feeling if your mind is struggling too.
We have had positive feedback from our event last Saturday and feel that we achieved what we set out to do, which is make an impact on young people with Duchenne, to show what is possible. There are many young adults with DMD who are getting out and about, going to university, making friends, starting families, getting married and are in employment.