Reflections on the RIX and Pathfinders Christmas health and wellbeing event held at the RIX Centre on Sunday 8 December
I came to the RIX Centre on Sunday to attend a Pathfinders event about health and wellbeing for people who have Neuromuscular conditions such as Duchenne Muscular Dystrophy (DMD). It was a really fun day.
The day started with Janet and Benjamin talking about the DMD Wiki project. Wikis are personal and private websites that let you share information about yourself. In the case of DMD it is important for professionals like doctors to see you as a person rather than just a medical diagnosis. Benjamin’s Wiki included stuff about the things he likes doing like sailing and going out with friends.
There was a very interesting talk on confidence led by a Pathfinder member named Connor who talked about what made you feel confident. For me it’s going out with my friends for my weekly Dungeons and Dragons club. He also spoke about not dwelling on mistakes you made or negative thoughts but instead focus on small victories such as having a walk outside or reading a chapter of a book. I also got my nails manicured and colored black with nail paint. We played the board game Herd Mentality which is a game where you have to answer questions. To score a point your answer needs to match with the other players and if your answer does not match you get handed a pink cow. Janet and Myan won the game as they scored 8 points which is how many you need to win.
At lunchtime we had amazing Caribbean food. There was really nice jerk chicken and salmon.
In the afternoon there was a petting zoo with a range of different animals. This was really fun as I got to stroke some lizards. The first one was a very lovable bearded dragon who wanted to be held and cuddled like a dog. The other lizard was a monitor lizard rescued from Portugal because they use its hide for making tiles. There was a scary Tarantula spider which I didn’t hold because I don’t like spiders that can bite. I also weirdly enjoyed handling a cute rat.
Overall it was a very fun event and I really enjoyed it and would love to go to one again.
Connor, who is the engagement officer at Pathfinders Neuromuscular Alliance said:
‘”It was great to see everyone taking part in confidence-building and games, and learning how the RIX wiki could really help people in their lives. I feel like we’ve built a fantastic community of people who can share their life experiences and teach each other so much. I’m so glad everyone had a great time out of the cold and windy weather!”
Pathfinders Neuromuscular Alliance
Written by RIX co-researcher Saul Catlin