‘Adapting to Change’ was born from the MD Support Centre’s 2023 Open Day, where a small panel of service users took centre stage to discuss transitioning to using various pieces of mobility equipment. Core members then came together to form ‘Adapting to Change,’ with a goal of bringing together and helping our community by sharing experiences.

From my own personal journey, I firmly believe this is how we learn to navigate the life that is living with a neuromuscular disease. While professional bodies have their place, you can only take away so much from them. The advantage we have is in the ability to guide one another within our community by sharing our situations, challenges or accomplishments. This reciprocity lends to positive change, which can then be integrated into everyday life, thus enriching each individual’s management of their condition.

During our last session, Leanne started off talking about her lived experience with having carers, which turned into a rather constructive discussion with several people talking about their own experiences and asking relevant questions. We discussed everything from falls in toilets to having to be in bed for 8pm! And also how ‘Access to Work’ can be used positively to provide care and equipment for when people are in work, such as in Leanne’s case having a PA assist her with various work related tasks and in going to the toilet, as well as having a track hoist installed to help her with transfers.

What was also interesting in this particular session is that there seems to be a lot of blurry lines between differing Local Authorities on what is provided, and what needs to be contributed to on this vast subject that is Adult Social Care. It is a minefield, and we only really scratched the surface.

A place to share personal experiences

Other previous sessions have seen ‘Adapting to Change’ core member and service user Tony talk about taking a wheelchair on a cruise for the first time, and how he went from not being able to look at it to having no regrets once on board!

Neil has touched on travelling to Jersey via ferry and how his scooter just about fitted into the lift, whilst I myself attempted to discuss the same holiday in terms of the liberation experienced by overcoming great obstacles (mainly those concocted by the mind). That is to say, surrendering to receiving personal care and not being too intimidated by having to let go of my independence for the week.

Our session on driving with a disability was something quite close to my heart. Being diagnosed later in life, I passed my driving test not even really knowing what muscular dystrophy was! I held a full manual licence and drove manual cars until I started having difficulty pressing the clutch and switching my right leg between gas and brake. I remember vividly at the time the fears and anxiety I encountered, not really understanding what help was out there to keep me on the road. It was overwhelming and terrifying! I thought my days driving were numbered – but how wrong was I?!

I transitioned (or rather adapted to change), changing to an automatic vehicle and having hand controls fitted until I couldn’t get out of that car anymore, and by this point, I was already considering needing a wheelchair. In recent years, I’ve become a Motability customer due to needing a WAV (Wheelchair Accessible Vehicle). I now drive from my wheelchair and have ‘Spacedrive’ controls fitted, as using a steering wheel became tricky.

Supporting each other

Unfortunately, we will have to continuously adapt during our lifetime – such is the nature of progressive conditions. One seemingly gets over one hurdle only to be met by another. We think we have “solved” one issue to be presented with one more! This is also where ‘Adapting to Change’ comes into its own. There is no quick fix, not even a permanent solution, really. But together we can feel our way through our individual circumstances, alongside each other, guiding one another as we go.

Our last session certainly left me feeling full of gratitude that we have this community, that we can learn from each other and lean on each other in times of challenge or even share those moments of joy between ourselves – because it’s all too easy not to focus on those moments but they are vitally important on this journey, if not paramount to being able to learn to live with a disability.

Social support

With that in mind, I encourage anyone to join in with the Adapting to Change sessions, be it online or in person. Whether you want to speak up or just sit there quietly taking it all in – it really doesn’t matter. One may feel encouraged to take action, whereby perhaps they’ve procrastinated (we’ve all been there) or something could just click into place, like a realisation of sorts. I do believe there is comfort in sharing this sort of space with fellow service users, (and another type of comfort in the form of food, namely pizza, which comes afterwards!).

So, of course, if you do join in person you get the opportunity to join us for pizza afterwards!  We typically head to Benugo’s situated at the Warwick Arts Centre, which is fully accessible, has ample and adequate parking spaces, and even a ‘Changing Places’ toilet! The social aspect is of vital importance to wellbeing, so please do come along if you feel you can. We also welcome your ideas and topics for future discussions!

In the meantime, go steady.

Much love

Em x