Josh Cook, 35, a painter and decorator from Huddersfield, is campaigning for the assisted dying bill after being told he carries the same altered gene that led his mother, Lisa Cook, to take her own life in 2024. He says he will one day enact his own version of her plan as he faces the same deterioration with age.
Lisa, a former head of purchasing, began struggling with speech and muscle spasms that made her "look like she was drunk" before becoming incontinent and having accidents. She died by suicide, and Josh, who found her body the following day, said he was aware of her plan but she insisted he leave her to do it alone to safeguard him from prosecution.
A family condition
Huntington's disease is an inherited genetic condition caused by an altered gene which affects movement, memory and thinking. It usually starts in adults between the ages of 30 and 50. Josh watched his grandmother succumb to the disease too, and he has already had a vasectomy as he did not want to risk passing the condition further down the line.
Josh said: "When mum became symptomatic, she called me aside and told me 'I'm done'. I knew what was coming and there was nothing I could say to her to change her mind. She told me to leave on Friday and when I came back Sunday, I knew what I'd be walking into, I knew she'd be gone, but it still hit me."
Choosing quality over quantity
Josh said his mother could probably have survived another three or four years before her muscle control became really bad, but that was her limit. He said: "I'm completely and utterly healthy right now and I should have until I'm 55 or 60 until it affects me so until then I want to get busy living. But like my mum, I feel my life is my own and the quality of my life is more important than the quantity."
He added: "If I wait, I'll end up choking on saliva, not knowing who my loved ones are. I'll become a shell and that's not what I'm here for. I can't look after my loved ones if I'm a quivering wreck in a chair, and I never want to get to that point."
Campaigning for change
Josh, who plays rugby and coaches youth teams, is advocating for the assisted dying bill to be passed. He said: "The bill won't affect people until they have a loved one with a terminal diagnosis. 90% of people I know who have lost a loved one to a terminal illness would back this. Terminally ill people should have the right to stop fighting and let them have a dignified end on their own terms. It should be a human right."
He said: "Imagine losing a loved one dying degree by degree over a series of months, every time their eyes flicker and their breath catches. With my mum, if there wasn't a risk of prosecution, I would have been there at the end with her." He added that instead, her final act was to safeguard him from prosecution by doing it alone.
A campaign spokesperson for Dignity in Dying said: "Josh Cook's story highlights the issues MPs face on 11th September. His mother Lisa, facing the same terminal diagnosis of Huntington's disease that Josh now lives with, took her own life alone and in secret rather than face the death the disease had in store for her. Josh is carrying on the fight so no other family has to face what his did."
Samaritans can be contacted for free, for anyone struggling with thoughts around suicide on 116 123.
