My Huntingtons Disease Story

Anyone who knows Marc Dickinson knows just what a top bloke he is! 22 years ago Marc and I met, and it was a match made in heaven. Even though people from Lancashire and Yorkshire shouldn’t get on, we clicked from the start and to this day still haven’t had a real argument. We met in the heady days of homosexuality being decriminalised in the RAF, allowing Marc to reveal his real self to friends and colleagues who suddenly understood his love of STEPs, Kylie, Britney and Buffy! And we were so lucky to find each other, and fall in love. We moved in, got dogs, had lots of holidays, went to concerts (yes including Kylie and STEPS!) Heck we even bought a Volvo! How very grown up! We had a lovely Civil Partnership, in Lancashire, and got on with a busy life at work and at home.

But in among all his chirpiness, Marc also had a sad story to tell. Of a hereditary neurological illness that causes a slow and tragic demise, robbing sufferers of their dignity, mobility, independence, communicative skills and mental stability. It name is Huntingtons Disease. Marc’s Mum Eve had died of Huntingtons shortly before we met, following a sad and prolonged decline. A fate that Eve’s father had also suffered, and that probably led Marc’s brother to take his own life, rather than risk the genetic roulette that Huntingtons Disease plays with families. Eve was very clear in her message to Marc - what’s killed me, could very likely kill you.

I’ve lived with the knowledge of this illness since Marc first told me, shortly after we met. Twenty two years ago. Even though finding this out about someone you are falling with was traumatic, and heartbreaking, I never once thought of ending our relationship. And I still don’t regret it. In sickness and health and all that. We’ve lived our lives assuming that he would inherit the illness and he’s made the most of every one of his 52 years. Skiing, snowboarding, parachuting, scuba diving, pole dancing… Nine years ago Marc decided to be tested for HD. There had been some of the early signs of Huntingtons. Stumbling, slurring, people thinking he was drunk. He wanted to know if this was the start.

And the result of the test was that yes, Marc had the faulty gene that would start to cause the decline. It had probably already started. But he’s carried on living life to the full. Doing all the things he wanted when he could. Making all the important decisions about his future and putting them in place. Taking part in research and drugs trials. And he isn’t giving up yet. But as Marc’s physical abilities diminish, it’s up to me to step in to carry on supporting the amazing Huntingtons Disease Association by raising money, as well as raising the profile of this dreadful illness. We must never lose hope for a cure or treatment, but we also need to support those around us who live with this illness every day. We’ve met a truly courageous bunch of people through our involvement with Huntingtons Disease. We have an amazing Huntingtons Disease Association (HDA) community locally, who are a strong source of inspiration and support. We help each live with this nightmareish illness, as well as trying to help our loved ones carry on enjoying life. So that’s why this year, I’m proudly joining Hampshire and Isle of Wight Huntingtons Disease friends, running under the banner of Team Harley.

I’ll be joined by HARLEY SALTER, VANESSA SALTER, EDEN SALTER, ALEX GRAHAM, EVE PAYLER, PAUL SALTER, JANINE AUSTIN

All team members will be running/walking in tutus showing that we really are “TUTU COOL” HEROES FOR HUNTINGTONS!!!

We are all running for friends or family impacted by Huntington’s Disease. Some are running because they themselves have Huntington’s Disease. We are all united in doing this because we want to show up for those affected by the cruellest of all illnesses.

Money raised will support families across the UK affected by Huntingtons Disease, it will also help fund the ongoing research into finding a cure.