I don’t remember the day my dad was diagnosed with motor neuron disease, but one day we were out in Leeds and he turned to me and said, “Jesse, do you think I’m walking slower than usual?” I remember that. I was 9 years old at the time and didn’t know what to say. Maybe he was a little bit, but he wasn’t holding my hand properly and it was confusing. My dad had always been very active and would spend hours playing in the garden with his sister and me, but suddenly he couldn’t grip things with his fingers and toes, and he became irritated and upset. After he was diagnosed with his MND, I remember thinking that at least I knew what the disease was now.
It is difficult for children to understand that it is not always possible to make someone better. It’s not that my father didn’t try.
By nature, he was positive and determined, and had no intention of giving in to MND. He vowed to do everything he could to stay healthy and stop the progression of the disease. I knew it was an incurable disease – my parents didn’t try to hide it from me – but for a while I believed that maybe my dad would find a way to get through it. I don’t mean to find a cure, but I thought maybe I could find a way to slow the progression and not have to deal with the intense suffering.
He tried every treatment possible and even went to India for a month of psychological treatment. It was hard to watch him go through all of this, but it gave me hope. But nothing changed, and by the time he left for India for his third Ayurvedic treatment, he was starting to feel like he was grasping at straws.
My father and I first had a conversation about the end of his life three years ago. Hearing him tell me he wanted assisted dying made me incredibly depressed. Just as I was depressed when he started talking about this topic on his podcast. kill phil. But I would feel exactly the same way if I were him. That’s why I’m so proud of him speaking out. He doesn’t want to leave us, but when faced with this inevitable situation, I don’t know if the amount of suffering he endures with this disease is fair to him or to us.