Woman Shares Early ALS Signs After Losing Husband and Brother to MND
A woman who tragically lost both her husband and brother to Motor Neurone Disease (MND), the same condition that recently claimed the life of actor Eric Dane, has come forward to share the unusual early "secret signs" of what she describes as a "cruel and devastating" incurable illness. Carol Deytrikh-White, a 65-year-old retired nurse practitioner from Huntingdon, Cambridgeshire, experienced the profound loss of her husband Alex in March 2009 and her brother Brian in 2022, both succumbing to MND.
Understanding Motor Neurone Disease and Its Impact
Motor Neurone Disease is a life-shortening, incurable condition that progressively weakens muscles, eventually leaving individuals unable to move, breathe, or speak. The most common form is amyotrophic lateral sclerosis (ALS), which was confirmed as the cause of death for American actor Eric Dane, known for his roles in Grey's Anatomy and Euphoria, who passed away on Thursday after a brave battle.
Carol, reflecting on her personal experiences, stated: "We're all aware that MND is one condition you don't want to get - it's so cruel. I think I knew that Alex had MND before he did - but the diagnosis was a completely devastating, heart-dropping kick in the stomach." She emphasized that the disease affects entire families and, for most patients, offers little hope, making awareness and empathy critical.
The First Subtle Symptoms Experienced by Alex and Brian
For Alex, an officer in the RAF who was physically fit and enjoyed activities like squash and running with Carol, the initial warning sign emerged during his regular exercise routine. Despite maintaining a thrice-weekly running schedule, he found it increasingly difficult to run, later developing weakness in his left arm. After failing his RAF medical, tests were conducted, initially suspecting a trapped nerve before the devastating MND diagnosis was confirmed.
In contrast, Carol's brother Brian, who was based in Thailand at the time, experienced a daily loss of voice towards the evening as his first symptom. He communicated this to Carol via email, and after she reviewed his letters and test results, the diagnosis was confirmed during a visit to the UK. Brian returned to Thailand, with Carol traveling to assist with his care until his passing at age 57.
Carol's Caregiving Journey and Fundraising Efforts
Following Alex's diagnosis, Carol reduced her working hours to just a few per week to provide full-time care as his condition rapidly deteriorated. She described the progression as quick, with Alex passing away within two years. In the final weeks, she attended to him every half hour due to his inability to swallow, managing feeds and ventilation throughout the day and night.
"I couldn't go out, not even to the shops. But all I wanted was to be with him, I didn't see it as a sacrifice. It was a privilege," Carol recalled. After Alex's death, she was stunned when Brian received his MND diagnosis years later, noting the rarity of the disease and lack of genetic relation made it unbelievable and equally devastating.
Carol has since remarried to John White, 69, and together they dedicate significant time to fundraising for the Motor Neurone Disease Association. Inspired by Alex's own fundraising efforts, they are walking the entire coastline of the UK, a journey totaling approximately 11,000 miles, with about 8,000 miles of actual walking due to path layouts. Completed in sections over the past decade while balancing time with their combined seven children, 11 grandchildren, and one great-grandchild, the challenge has raised £5,500 so far and is expected to be finished in four years.
A Message of Hope and Awareness
Carol highlighted the importance of awareness, stating it has a two-fold benefit: fundraising for treatments and fostering empathy. "For other conditions, there is an element of hope, but at the moment, for MND, it's not there. And hope is the last human instinct to go - I almost didn't believe Alex was dying on the night that he died," she shared.
She concluded with a powerful message: "But when you do watch someone you love die, you realise how lucky you are to have that day and the next. In my lifetime I want to keep fundraising and I want to see hope given for others diagnosed. I realise we're privileged to have life and it's our duty to make the most of it." Through her efforts, Carol aims to keep Alex's memory alive and celebrate his life while advocating for those affected by this devastating disease.
