Josh Cook, a 35-year-old painter and decorator from Huddersfield, West Yorkshire, is campaigning for the assisted dying bill after his mother Lisa died by suicide in 2024, following her deterioration from Huntington's disease. Josh, who carries the same altered gene, watched his mother's condition worsen before she took her own life at age 57.
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. Huntington's disease is an inherited genetic condition caused by an altered gene that affects movement, memory, and thinking, usually starting in adults between ages 30 and 50.
MPs reject assisted dying bill
On Friday, 11 September, MPs voted against an attempt to legalise assisted dying in England and Wales. The Terminally Ill Adults (End of Life) Bill proposed allowing adults with fewer than six months to live to apply for an assisted death, subject to approval by two doctors and an expert panel. After a four-and-a-half-hour debate, MPs rejected the legislation by a majority of 16, with 286 votes against and 270 in favour.
Josh, who was aware of his mother's plan, said Lisa insisted he leave her to do it alone to safeguard him from prosecution. He found her body the following day and said he will one day enact his own version of her plan, as he too faces deterioration with age.
Family history of Huntington's
Huntington's disease runs in Josh's family; he watched his grandmother succumb to the disease as well. When Lisa became symptomatic, Josh knew what her choice would be. "Her speech was slurred, and all through her life she had prided herself on speaking for a living as a purchasing manager," Josh explained. "She probably could have survived another three or four years before she was really bad with her muscle control but that was her limit."
Josh has already had a vasectomy to avoid passing the hereditary condition further. He supports the bill, saying people going through a similar journey "should have the right to stop fighting" and that the bill "adds a choice, rather than taking it away."
Advocating for choice
Josh, who plays rugby and coaches youth teams, is advocating for the bill to be passed so no one else has to make the choice his mother made alone. "Imagine losing a loved one dying degree by degree over a series of months, every time their eyes flicker and their breath catches," he said. "With my mum, if there wasn't a risk of prosecution, I would have been there at the end with her."
He added: "There's a lot of misinformation, but it's about a choice. It's not mandatory, nobody has to do it. But people who are terminally ill should have the right to stop fighting, and let them have a dignified end on their own terms."
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." They added: "Josh is carrying on the fight so no other family has to face what his did."
Samaritans can be contacted for free by anyone struggling with thoughts around suicide on 116 123.
