Man whose mum took life because of illness says he has it, and will do the same

Man whose mum took life because of illness says he has it, and will do the same Josh Cook, 35, knew what his mum was going to do and says some day he will do the same A man whose mother took her own life after Huntingdon's disease left her weak and incontinent is campaigning for the assisted dying bill - after being told he has the same condition. Josh Cook, 35, watched his mum Lisa Cook, 57, deteriorate before she died by suicide in 2024. The condition is an inherited genetic condition caused by an altered gene which affects your movement, memory and thinking. It usually starts in adults between the ages of 30 and 50. Lisa, a former head of purchasing, began struggling with speech and muscle spasms which made her "look like she was drunk" before becoming incontinent and having accidents. Josh, a painter and decorator from Huddersfield, was aware of her plan but Lisa insisted he left her to do it alone to safeguard him from prosecution, he said. And Josh, who was the one to find her body the following day, said one day he will enact his own version of her plan - as he too carries the same altered gene and will face his own deterioration with age. He has already had a vasectomy as he didn't want to risk passing the devastating hereditary condition any further down the line. He is supporting the assisted dying bill as he believes people going through a similar journey to his mother "should have the right to stop fighting" - and the bill "adds a choice, rather than taking it away." 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. "By then her speech was slurred, she was twitching, shaking and unsteady, and she had become incontinent, which was a sticking point for her. I have the gene and my mother brought me up knowing I was at risk, it was never a shock to me that I will die. "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. "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." Huntingdon's disease runs in Josh's family and he watched his grandmother succumb to the disease too. He said when Lisa began to become symptomatic he knew what her choice would be. He said: "Her speech was slurred, and all through her life she had prided herself on speaking for a living as a purchasing manager. "She probably could have survived another three or four years before she was really bad with her muscle control but that was her limit. My grandmother had stopped me going to visit when her condition got bad because she didn't want my memories of her ruined. "So when my mum's became bad she pulled me aside and told me to go home and not come back until Sunday. I knew she'd be gone when I came back. Every part of me was screaming to go back and stay with her, but I knew it wasn't what she wanted." While Josh has yet to experience symptoms of Huntingdon's he is aware of what his future will involve. He said: "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." Josh, who plays rugby and coaches youth teams, is advocating for the assisted dying bill to be passed. He wants to make sure nobody else has to make the choice his mother made, and go through it alone to protect their family. Josh 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. "I would have held her hand the entire time which is what she would have wanted - to say goodbye and slip away in peace. Instead, her final act was to safeguard me from prosecution by doing it alone. I get jealous of people who can go to Dignitas and say goodbye to their loved ones. To settle and give you peace and closure." Josh is sharing his story to show the real life impact of assisted dying not being legalised - knowing his fate will follow his mother's if the bill isn't passed. He said: "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. Let's get back to being a compassionate nation and treating people like we actually care. I don't see what my mum did as suicide. Suicide is when you're struggling. "This was a woman who was terminally ill and she took back her power and made the decision for herself while she was still mentally capable. I think that should be a human right." 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.