Because of the uncertainly that’s always there for a family living with Huntington’s disease, I’m kind of used to not knowing what’s coming next. Living through the pandemic is just more to add to the pile.”
Bruce Wilson, a 20-year-old Computing student from Edinburgh, is staying home with mum Lesley (53) and dad Graham (53), who has Huntington’s disease. He shares their experiences of life in lockdown and how he and his family are finding ways to cope with the ‘new normal’ while staying connected with loved ones in the outside world.
“Like many people who have HD symptoms, any change in routine is especially hard for Dad. He’s used to meeting different people on specific days, that’s what makes him happy and keeps him going. Now that’s completely disappeared, Dad still wants to go out as he usually does, just like the rest of us.
“As time goes on, it’s becoming a bit easier, partly because my grandma has started using Zoom and Dad finds that being able to talk to her is helping.
“We try to have a laugh and not take things too seriously but the reality is that it’s really hard. Mum is the most amazing and strongest person I know. She works full time in catering at Waverley Court and this is the first time she’s been off for this length of time in over 10 years. While it does mean we both have more time to spend with Dad, it can be difficult as we also have no escape from home life, whether that be work, or university, or just something like eating out.
“But Mum keeps herself feeling positive by staying busy, especially in the garden, and we’ve been participating in online quizzes every week or so. They usually have some sort of dress-up theme, something that I can throw together from what’s in the house. One week we were all wearing funny hats and another time we made a giant rainbow out of wood for the ‘Rainbows for NHS’ themed week. Those little creative moments definitely help to keep me sane.
“I spend my time completing university work, building fun things, and playing video games or chatting to friends online. I miss meeting up with them and we’re making big plans for what we’re going to do when the lockdown is over.
“SHA is a great support to the whole family, especially now. My youth advisor Pete is in touch all the time and he organises Zoom sessions so I can catch up with friends I’ve made through SHA. Mum and Dad speak regularly to Trevor, our SHA HD Specialist, and that helps a lot too. As a family, we couldn’t ask anything more of them right now.”
Thank you to Bruce and his family for sharing their story in support of SHA’s Stay Home and Step Up coronavirus crisis appeal. As the only charity in Scotland dedicated to changing the lives of people with Huntington’s disease, SHA is reaching HD families all over Scotland with the extra support they need right now. Please join us and Stay Home and Step Up for HD families at https://hdscotland.org/stayhomeandstepup/