Simon shares the importance of going out on trips and making memories for both his wife, Julie, and for himself.
Going out was always part of our lives, in fact Julie wanted to go out virtually every day! I have no doubt that trips stimulate Julie, seeing people stimulates her. Being out experiencing sun or rain, is giving Julie the feeling of still being alive, of still being important in the world, of still playing a part in life.
Simon and his wife Julie are both retired teachers. Julie had to retire in 2010 due to her symptoms and Simon retired shortly after to care for her. Julie’s father had Huntington’s disease and she tested positive in 2003 after feeling movements in her leg. Simon recalls that Julie coped well and tried to remain positive.
It was almost like a dark shadow had gone, and we could now move on and enjoy life. Every opportunity, we took holidays, went to concerts, and made the most of things.
Before Julie’s Hutington’s disease progressed, they would go out most days visiting attractions, going to shops and cafes. After retiring due to her symptoms, Simon says that it was very important to Julie that they lived an active life and to not be defined by the disease.
Julie is now in a nursing home but Simon continues to take her out most days. He is fortunate enough to have the help of the carers in Julie’s home as he says that going on bigger trips can be difficult otherwise.
This year it was Simon’s seventieth and Julie’s sixty fifth birthday in the same week. Julie can no longer talk but Simon believes she can understand everything so wanted to celebrate these special events in their favourite place, with their close friends. He found a fully accessible accommodation in New Quay, Wales and their friends joined and stayed nearby.
Some friends on the trip recommended the ABBA Voyage show in London. Simon said that had he been booking two standard tickets it would have taken five minutes. But with no phone lines to discuss specifics, needing to order a ‘Nimbus Accessibility Card’, then being unable to book three tickets, he said the whole process took him eight days.
These things can be very frustrating, but you have to keep battling them. There should be more phone lines available to book events. But the day went brilliantly, with the whole experience doing us both a lot of good.
Living their life alongside Huntington’s disease and still going out or booking trips and experiences together is paramount for Julie and Simon as well and many other people affected by the Huntington’s. Where possible, try not to let Huntington’s stop you or your loved one from doing the things you love. Whether that’s going for a walk, sitting by the sea or in a park, visiting cafe’s, museums or music and theatre shows. Some of these things may be difficult but start small and ask for help.
Our trips and making new memories is important for me too, it helps my mental health. I feel that I am still doing useful things, enjoyable things with my lovely wife. I find inspiration from Julie’s resilience and from her bravery. She is such a fighter.
Thank you to Simon for sharing this story with us.
If you are looking for accessible activity ideas for your loved one or need to know more about accessible travel and transport, you can find more information at the bottom of our page for carers.