Woman’s husband and brother died from Eric Dane’s disease and had ‘signs’

A woman who lost both her brother and husband to Motor Neurone Disease like Eric Dane has disclosed the unexpected initial « secret signs » they displayed of the « cruel and devastating » terminal illness. Carol Deytrikh-White, 65, was bereaved when her husband Alex and brother Brian succumbed to MND in March 2009 and 2022, respectively.

American actor Eric Dane, recognised for his performances in Grey’s Anatomy and Euphoria, died on Thursday following a battle with amyotrophic lateral sclerosis (ALS), the most prevalent type of MND. Alex’s initial symptom manifested when he observed running becoming increasingly difficult, despite maintaining a routine of three sessions weekly.

For Brian, his earliest indication was experiencing voice deterioration towards each day’s conclusion. MND is a life-limiting and incurable disease that triggers muscle deterioration until an individual becomes incapable of movement, breathing or speech.

Carol, a retired nurse practitioner from Huntingdon, Cambridgeshire, assumed caring responsibilities for her late husband Alex during the months preceding his death. She now dedicates her time to promoting awareness and generating funds for the condition, which she characterised 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 fit and he and Carol would frequently play squash and go running together. However, before receiving his diagnosis, Carol recalls Alex, who served as an officer in the RAF, noticed his running was becoming more difficult despite training three times weekly.

He developed weakness in his left arm and, following a failed RAF medical examination, consultants began conducting tests. Initially, doctors suspected a trapped nerve might be responsible, but he received his diagnosis shortly afterwards, which Carol described as « devastating ».

Following his diagnosis, as Alex’s health declined, his ability to walk, talk, breathe and sleep diminished. She ultimately cut back her working hours to just a few per week in order to look after 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. »

Following Alex’s death, Carol felt as though she had been « thumped in the stomach » when her brother, Brian, received an MND diagnosis several years later. Brian – who was residing in Thailand at the time of his diagnosis – emailed his sister explaining he was losing his voice by the end of each day.

He had posted letters and test results back to Carol and the diagnosis was confirmed during a visit back to the UK. Brian returned to Thailand, with Carol travelling over to assist with equipment and care before his passing in 2022 aged 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 dedicates much of her time to fundraising for the Motor Neurone Disease Association alongside her husband, John White, 69. Alex had already generated substantial funds for the association and Carol was determined to continue his efforts and keep his memory « very much alive and celebrate his life ».

They are walking the entire coastline of the UK, which totals approximately 11,000 miles, though around 8,000 miles of actual walking due to the configuration of the paths, she explained. They have been completing it in sections over the past decade, whilst balancing time with their combined seven children, plus 11 grandchildren and one great-grandchild.

At their present pace, they expect to complete the challenge in four years’ time. The endeavour has generated £5,500 for the MND Association thus far.

She explained: « 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. »