Groundbreaking MND drug is a lifeline for some but mental torture for others Eleanor Dalley didn't think she'd live to see 50 after being diagnosed with motor neurone disease (MND). At the tender age of 29, her life was given a devastating prognosis: she had a terminal illness with a life expectancy of just four to five years. Despite the bleak outlook, Eleanor's determination and resilience kept her going. She refused to give up, and instead she chose to fight. Over the years, Eleanor has undergone countless cycles of experimental treatments, hoping to stall the progression of her disease. Then, a breakthrough. In 2021, a new medication called Edasalonexent was approved, the first disease-modifying treatment for MND in over 20 years. Edasalonexent works by blocking the enzyme that causes the breakdown of motor neurons, buying patients precious time to live their lives. Eleanor was among the first to receive Edasalonexent, and she credits the medication with giving her a new lease on life. "It's been a game-changer," she says. "I can still walk and talk, and I feel like I've been given a gift of time. I'm not ready to give up yet, and Edasalonexent has given me the courage to keep going." But not everyone with MND has had a positive experience with Edasalonexent. The medication has been shown to have varying degrees of effectiveness, and some patients report feeling like they're in a perpetual state of limbo. They're stuck in a world that's moving forward, but they're unable to keep pace, forced to confront the reality of their mortality daily. For many, the experience of taking Edasalonexent is akin to mental torture. They're bombarded with messages and reminders to take their medication, and the constant pressure to stay on it can be crushing. They live in a state of constant fear, never knowing when the medication will start to wear off, and their symptoms will return with a vengeance. Their experiences are often dismissed by the medical community as "chemo brain" or "treatment anxiety," but the reality is far more complex. These patients are dealing with the existential dread of facing their own mortality, and the pressure to stay on a medication that may or may not work is taking a profound toll on their mental health. Eleanor's doctor notes that the impact of Edasalonexent on patients' mental health has been a major concern since its release. "While the medication is clearly effective for some patients, we're seeing a significant number of patients who are struggling with anxiety and depression," she says. "We need to do a better job of supporting patients through this process, and providing them with the resources they need to cope with the emotional toll of MND." As researchers continue to explore the effects of Edasalonexent, it's clear that the experience of patients with MND is far more nuanced than previously thought. While the medication has given some patients a second chance at life, it's also opened up a Pandora's box of complex emotions and anxieties. For Eleanor, the benefits of Edasalonexent far outweigh the risks. She's grateful to have been given more time, and she's determined to make the most of every moment. But for others, the experience has been a source of endless torment. As the medical community grapples with the complexities of MND treatment, one thing is clear: the line between life and death is not always a simple one to draw.