My earliest memory is when we left my Dad when I was four. We knew nothing about the disease that was behind the dramatic changes in his behaviour. He didn’t know anything either, which is heart-breaking to know. Sadly, his family had kept it to themselves and allowed him and Mum to have four children completely unaware of the potential impact on their genetics. Eventually Mum found out from the family that Dad had Huntington’s Disease and told us we might have it too. But she’d been told that only half of children could inherit it – the 50% was something everyone took literally back then. He died when I was sixteen (when he was age 54) and I felt strongly that I needed to know my genetic status straight away. I know everyone approaches this differently – I guess I must have instinctively thought ‘forewarned is forearmed’. I got tested at nineteen when I lived in Edinburgh, but it was many years before I could share the news with my Mum that I had the gene. It meant all four of her kids did – not the statistics we’d pinned our hopes on. Mum remarried and I have been lucky to have a really positive influence in my life from my step-Dad. She is a devoted mother and has spent much of her time looking out for my siblings.
Someone told me that the best thing I could do for my future self was to stay healthy. It really did sink in and thank goodness I started yoga right there and then in my twenties. I did a PhD and met my husband and then went travelling – as much as I could. I wanted to see every corner of the earth and meet people from different walks of life. I worked for the MHRA in London for a while and then came home to Scotland. My Regulatory Affairs work in global clinical trials meant I had clients all over the world, and I still got to travel lots and loved the global perspective it gave me on life. I suspect I was probably trying to squeeze all my life into a few years – just in case I was dead by fifty… which were my expectations. Sadly, though my three siblings all went into full time care around age forty and I have lost my brother (age 50) and one of my sisters (age 57). My other sister (age 56) is in a care home. While we have had many laughs, it has been really tough at times, especially when being heavily involved in decisions about their care. With hindsight, it’s clear that they didn’t make the same healthy lifestyle choices I did and I’m now fifty and still asymptomatic.
I stopped working and was on antidepressants for many years. My wonderfully supportive husband has always encouraged me to try exercise of any form and especially running. Now, I am managing life with therapeutic doses of running and yoga.
We are blessed with two amazing children – they make me so proud every day. My son’s at university now and my daughter is right behind him. They’ve not mentioned getting tested and will be on their own personal journey for that and I hope they know we can talk anytime… I hope every day that they will not have the gene – but it’s not the end of world – it’s something you take time and space to get your head around and make yourself stronger. And I take great comfort in that they will have more choices if they want to have children without the HD gene, and the treatment research that’s going on is very promising.
I met the Duke of Cambridge in 2019 when I got an MBE for services to Scottish Huntington’s Association. A lot of that recognition was, of course, thanks to all the kind people who have raised money and awareness and joined in with all the many efforts I’ve embarked on over the years. The Duke knew of the condition and the great work of the charity - so it felt like a really big awareness moment for our wee HD community. I know it meant a great deal for everyone in that community to be recognised for a fleeting moment and I thanked him on everyone’s behalf for the awareness-raising opportunity it was. In the background I was working on My Zen Run with the SHA fundraising team and we’re now starting to get things ready for our third year of this virtual well-being and running event. If running and yoga can literally be a life-saver for me- then I really feel compelled to spread the word. It’s been wonderful to see the HDAs come together for Family Matters this year and I’m delighted to be part of it.
Marie Short, Falkirk, Scotland