Actor Eric Dane, known for his roles in Grey’s Anatomy and Euphoria, died this week after suffering from ALS
A woman whose brother and husband died of Motor Neurone Disease like Eric Dane has revealed the unusual first “secret signs” they had the “cruel and devastating” incurable condition. Carol Deytrikh-White, 65, lost her husband Alex and brother Brian to MND in March 2009 and 2022, respectively.
American actor Eric Dane, known for his roles in Grey’s Anatomy and Euphoria, passed away on Thursday after suffering from amyotrophic lateral sclerosis (ALS), the most common form of MND. Alex’s first symptom was that he noticed running was getting harder, despite going three times a week.
For Brian, his first sign was that he was losing his voice towards the end of each day. MND is a life-shortening and incurable condition that causes weakening of the muscles until a person becomes unable to move, breathe or speak.
Carol, a retired nurse practitioner from Huntingdon, Cambridgeshire, became a carer to her late husband Alex in the months before he passed. She now devotes her time to raising awareness and fundraising for the condition, which she described as “cruel and devastating”.
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 was physically active, and he and Carol would regularly play squash and run together. But before he was diagnosed, Carol says Alex, who was an officer in the RAF, noticed his running was getting harder despite running three times a week.
He got a weakness in his left arm and, after failing his RAF medical, consultants started to run tests. It was first thought he might have a trapped nerve, but he was diagnosed shortly after, which Carol described as “devastating”.
After his diagnosis, as Alex’s condition deteriorated, he was less able to walk, talk, breathe and sleep. She eventually reduced her hours at work to just a handful a week, in order to care for Alex.
She said: “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.”
After Alex passed away, Carol felt like she was “thumped in the stomach” when her brother, Brian, was diagnosed with MND a few years later. Brian – who was living in Thailand at the time of his diagnosis – emailed his sister to say he was losing his voice at the end of each day.
He had sent letters and tests back to Carol and the diagnosis was confirmed on a trip back to the UK. Brian returned to Thailand, with Carol flying over to help with equipment and support before his death in 2022 at the age of 57.
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.”
Carol has since remarried and spends a lot of her time fundraising for the Motor Neurone Disease Association with her husband, John White, 69. Alex had already raised a lot of money for the association and Carol wanted to continue his work and keep his memory “very much alive and celebrate his life”.
They are walking along the entire coast of the UK, which is around 11,000 miles in total, and around 8,000 miles to walk because of the layout of the paths, she said. They have been completing it bit by bit for the past ten years, alongside juggling seeing their seven children combined, plus 11 grandchildren and one great-grandchild.
At their current rate, they anticipate finishing in four years’ time. The challenge has raised £5,500 for the MND Association so far.
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.”