Chilling video shows cruel impact of deadly motor neurone disease on 57 year-old's body in just a year

Daily Mail​

22-05-2025

A shocking video has documented the devastatingly rapid decline of patients with motor neurone disease—documenting the loss of one sufferer's basic bodily functions in just one year.
The Instagram clip, which has been viewed more than 6.3million times, reveals the heartbreaking difference in the health of 57 year-old Darin Nakakihara, from Southern California, who can be seen struggling to speak.
'My voice is almost gone,' he said. 'I am in a wheelchair most of the time. But I am still functioning'.
According to the video filmed earlier this month, the father-of-three now relies on a wheelchair to get around and needs assistance in almost every aspect of his life.
A clip superimposed over the most recent video show that, this time last year, he was walking and talking easily, like someone without the disease.
In May last year, despite getting tired really easily, the teacher was still able to walk, talk and function independently in day-to-day life, he told followers.
The progressive disease—which affects the signals sent between the brain and the rest of the body—first struck Mr Nakakihara in 2022.
He went from an active person with 'boundless energy' to a sufferer of multiple inexplicable health problems, which were subsequently found to be the result of ALS—the most common type of motor neurone disease, which gradually stops patients being able to move, talk and even eat.
ALS claimed the life of Sandra Bullock 's partner Bryan Randall in 2023 and the acclaimed scientist Stephen Hawking famously suffered from it.
The first signs of the disease were subtle. In summer 2022, Mr Nakakihara suffered a fall at home in his garage. He fell again when while taking school pictures.
By January 2023, he was rapidly losing strength on the left side of his body.
He developed 'dropped foot' syndrome and suffered from leg cramps at night and his body was constantly twitching.
Doctors initially diagnosed spinal stenosis—a common condition where the canal in the spine that contains the spinal cord becomes narrowed or restricted, causing pain in the lower back and legs, neck, arms and hands.
He underwent neck surgery in May 2023 to address his symptoms.
However, during his follow-up visits, Mr Nakakihara's surgeon became increasingly concerned about his lack of physical improvement.
He was then referred to a neurologist for further tests, who diagnosed ALS in November 2023.
Committed to spreading awareness for the devastating disease, he has urged his followers who have newly been diagnosed to record their voice whilst they still can.
'Record your voice right now, before it's too late,' he said in a video posted to Instagram.
'I'm serious. ALS can take your voice overnight, no warning, and once it's gone it's gone.
'But if you record it now, you can keep a part of yourself, your real voice, your tone your laugh. Trust me, future you will thank you.'
He has since pledged to document his voice every May 19th until it is gone.
In a separate video updating his followers on his current condition, he said:
'I had a clinic appointment last week, and it was a tough one. Probably the realest one yet. And not in a good way'.
Despite previously making headway with his breathing difficulties, Mr Nakakihara now requires a BiPAP machine to help him breathe.
Leeds Rhinos star Rob Burrow (pictured) died last year at the age of just 41 after a four-and-a-half-year battle with MND
'Everything got worse', he explained in the video.
'We ordered a cough assist and a Hoyer lift because that writing is on the wall for sure.
'I am trying to stay strong, I really am.
'But this one hit different. The reality of how fast things are changing is really starting to sink in'.
'But i'm still here, I'm still me and I still look for joy even when those moments are filled with tears.'
His friends have set up a GoFundMe page to help support his family with the finanical burden of an incurable disease, hoping that the funds will enable him to spend as much time as possible with his three daughters and wife.
ALS is a rare condition that progressively damages parts of the nervous system.
Around 5,000 adults in the UK have ALS and there is a one in 300 risk of developing the condition over the course of a person's life.
Life expectancy for about half of those with the condition is between just two and five years from the onset of symptoms. But these can worsen rapidly.
The most common cause of death for people with ALS is breathing failure.
Some people may live for up to 10 years, and, in rarer circumstances, even longer.
Along with twitches, cramps and muscle weakness are among the early signs of the condition, along with slurred speech and weight loss.
There is no cure but doctors can provide treatments to help reduce the impact it has on a person's life.
The exact cause is largely unknown, but current research points towards a complex interplay of genetic, environmental, and possibly lifestyle factors—and it often hits seemingly fit and healthy people.
Last year, Leeds Rhinos star Rob Burrow, 41, died after a four-and-a-half-year battle with the condition.
Locked-in syndrome (LIS) is a rare neurological disorder that can also occur in some progressive cases of ALS.