A woman has spoken about some of the less widely recognised early warning signs of Motor Neuron Disease (MND) following actor Eric Dane’s death, after the condition previously claimed both her husband and her brother.
The death of the Grey’s Anatomy star on Thursday has renewed focus on amyotrophic lateral sclerosis (ALS), the most common type of MND.
The progressive neurological illness gradually weakens and stiffens muscles throughout the body, and over time can take away a person’s ability to walk, speak and eventually breathe without support.
Carol Deytrikh-White, 65, has witnessed those early changes twice. Her husband Alex died from MND in 2009, and her brother later died in 2022. She says the first signs they experienced mirrored those reported by Dane as ALS began to develop.
Carol said: “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.
“It affects the whole family and, for the majority of people who develop MND, it doesn’t offer any hope. But awareness has a two-fold benefit – fundraising for treatments, but also so that the people around you can have more empathy for those affected.
“There’s a human tendency not to deal with or talk about things that feel uncomfortable.”
Alex, a physically fit Royal Air Force officer, began struggling to maintain his usual routine of running three times a week, a change Carol says stood out early on — and one also noted in Dane’s case.
When weakness developed in Alex’s right arm, military doctors later confirmed he had the terminal disease. Soon after, he had to reduce his hours as walking, speaking and sleeping became increasingly difficult.
Carol shared: “With Alex’s journey, the rate of progression was quick. He died within two years of the diagnosis.
“In the last two weeks I had to attend to Alex every half an hour because he was unable to swallow even saliva. I was attending to him all day, but I was also getting up throughout the night for his feeds and ventilation.
“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.”
Years later, Carol said she felt as if she’d been “thumped in the stomach” when her brother Brian told her he had also been diagnosed with an MND variant.
She recalled that it started with a message from Brian explaining he kept losing his voice by the end of the day. Carol urged him to seek medical tests, which then confirmed MND.
Carol said: “Hearing Brian’s diagnosis years after losing Alex, because MND is still relatively rare, and they didn’t have a genetic relation, it was unbelievable as well as devastating. Brian spent the last three of four years ‘locked in’ in his bed. He couldn’t move or eat.”
Now, Carol — who lives in Cambridgeshire, England — is preparing to walk the full length of the UK coastline to raise money for MND research and awareness. She expects the challenge to take at least four years, having already spent much of the past decade completing sections of the nation’s 11,000-mile coast.
She said: “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.
“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.”