Author: Charlotte Barrett, Guest Blogger & MHF Volunteer
In our latest blog, the Muscle Help Foundation charity is delighted to welcome Guest Blogger and MHF Volunteer, Charlotte Barrett, who shares the wonderful and fond memories she has of her grandad who lived with Muscular Dystrophy (MD). Charlotte says:
“My Grandad has been my inspiration for as long as I can remember. He was diagnosed with a rare form of muscular dystrophy (MD) called Myositis in 2003. I learnt so much from how he and my Nan handled his diagnosis. He had been living with MD for the past thirteen years with my Nan, as his full-time carer when he died in September 2016. I was fifteen years old.
I only have one vague memory of my Grandad walking and that was with a walking stick, otherwise in all my memories of him, he is using a wheelchair. My brother and I really knew him in no other way. His wheelchair and his MD weren’t something we noticed; he was just ‘Grandad’. He was funny, intelligent, and always optimistic.
For my Nan however this was a different story. Her whole life changed when she became my Grandad’s carer. Carers came every morning and every evening to help get him up and put him to bed. My Nan would be up before they arrived at 7am. She made them breakfast, tea and fed them biscuits. They became a second family to my grandparents, celebrating birthdays and Christmases together. Even now, my Nan is still in contact with a few of the carers and sees them regularly. My Nan cared for my Grandad right up until his last day and I believe she is the most resilient person I have ever met.
The days we spent with our Grandad ranged from trips to the beach, to cosy film afternoons where my Nan would feed us as many sweets as we could manage. He taught us to play draughts and chess, recorded every film he thought we might like, and spent hours helping us with our collections of stamps and coins. I don’t remember a time where he wasn’t smiling or trying to make us laugh with bad jokes. As his MD progressed, we had to do a little bit more for him. For example, he always completed the newspaper puzzle page and when he could no longer hold a pen, I filled out the answers for him.
My favourite memory by far are the stories he used to tell. He had a button on his wheelchair that we weren’t allowed to touch. I now know it controlled his speed, but we believed it made him fly. To us, it looked like a helicopter and if we touched this button, propellers would unfold from his headrest, and he could fly. That’s how Grandad and his flying wheelchair was born. He took us on adventures across the world. Of course, we were allowed flying horses so we could travel alongside him. We battled pirates, visited volcanoes, and even saw fairies, always arriving safely home in time for tea. We believed he could do anything, and I hope one day to turn these stories into a children’s book.
Everything I have learnt from my Grandparents, I try to implement in everyday life. Courage, resilience, kindness, and optimism. Along with the fact that if you’re not laughing, you’re not living life to the fullest. I will always be grateful for what they have taught me, and I hope I make them proud.”