On Saturday Jon, Tyran and Mitch headed to Keech Hospice in Luton for our information social day. We were given a warm welcome from Jackie Purdy who works at the hospice and received valuable input from Andrew Rose, a local neuromuscular advisor who helped in putting this event together. We covered a number of topics from being social to volunteering and work. We didn’t spend too much time on these subjects, as we wanted to give more time for discussion so each topic lasted around 3 to 5 minutes.
After a brief introduction, we talked about socialising, getting yourself out there and about maintaining positive relationships with your family, friends, carers and finding love. The most important of all was and always will be about staying healthy because if you’re not looking after yourself quite as you should be, you can’t do all the other stuff. This ranged from good nutrition and a healthy balanced diet to making sure you attend your regular specialist clinics and mental wellbeing. This is where this type of event worked well because young people and their parents / carers got to voice their opinions freely, which added depth to what we had been saying.
At lunchtime, us at Pathfinders took the time to go around individually to find out more about each other and encourage people to get in touch with us. We took questions and focused on achievements that have been made, that they are proud of and also what they would like to achieve in the future. It was great to hear these stories and equally it made us reflect on our own ambitions. After lunch all three of us talked about our journeys to finding employment. This often started with volunteering opportunities, that progressed into paid work. It’s the sort of thing that can take quite a while, because of our limitations it’s easy to be overlooked or we underestimate ourselves. Although it is hard enough finding a job for anyone, we just needed to persevere that little bit extra.
Our final topic was care packages. Due to the nature of this particular topic, as you can imagine it caused quite a response. Possibly the most difficult area of our lives, with a constant battle for the right funding and the right help we must have for our care needs. This does come with difficulty, however there are people out there with good packages of care that prove it is possible. It’s just a case of keep calm and carry on, this is the case in many scenarios actually.
We really enjoyed the day and feel that the information we delivered was the sort of information we would have liked to be able to access when we were younger. We had discussions from all sides of the coin, positive and even negative experiences help us to support each other and learn from one another. We look forward to putting on more events like this one and hope to reach even more people with Duchenne.