William Morgan
A woman has shared some of the lesser-known early signs of Motor Neuron Disease (MND) in the wake of actor Eric Dane's death, after losing both her husband and brother to the incurable neurodegenerative illness.
The death of the Grey's Anatomy star on Thursday brought renewed attention to the health condition that claimed his life, amyotrophic lateral sclerosis (ALS) which is the most common form of MND.
This type of progressive disease causes every muscle in the body to stiffen and weaken over time, eventually taking away an individual's ability to walk, speak, and even breathe by themselves.
Unfortunately, 65-year-old Carol Deytrikh-White has seen the early stages of this disease up close twice, after losing her husband Alex and brother to MND in 2009 and 2022 respectively. But the early signs of their illness were the same as those experienced by Dane.
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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, who was a physically fit officer in the Royal Air Force, started to find his three times a week running schedule hard to follow, the exact same symptom noticed by Dane as ALS began to take hold.
After developing a weakness in his right arm, military doctors confirmed that he had the terminal illness. A short time later, he was forced to cut back his working hours as his ability to walk, talk and sleep began to diminish.
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."
After going through all of this, the widow said it felt like she had been 'thumped in the stomach' when her brother Brian told her seven years later that he too had been diagnosed with a form of MND.
It all began when he sent Carol an email sharing that he kept losing his voice towards the end of each day. After Carol had insisted he get tested, his MND diagnosis was confirmed.
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, from Cambridgeshire, England, is now planning on walking the entire length of the UK's coastline to raise funds for MND awareness and research. A task that is expected to take at least four years to complete, after spending much of the past decade completing sections of the country's 11,000 mile coastline.
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."