Latest news with #motorneuronedisease


Daily Mail
a day ago
- General
- Daily Mail
Prescription pill taken by 9million is linked to devastating motor neurone disease, researchers find
Antidepressants, taken by some 8.6 million people in the UK, could raise the risk of motor neurone disease, a major study has suggested. Scandinavian researchers also found that other commonly prescribed drugs, like anxiolytics used to treat anxiety disorders, sleeping pills and sedatives were also linked to an increased risk of the disabling condition. Motor neurone disease, of which amyotrophic lateral sclerosis (ALS) is the most common form, is an incurable, muscle-wasting condition that eventually stops a patient from being able to move, talk and even eat. Now, research has suggested that being prescribed any of these medications just twice over the course of a lifetime could raise the chance of developing the condition by up to 34 per cent. Scientists found the risk remained even if the drugs were taken more than five years before diagnosis. However other scientists have urged caution over the results of the study, suggesting the link lies with the fact mental health patients are more likely to develop MND, rather than medication. Professor Ammar Al-Chalabi, a specialist in complex disease genetics at King's College London warned: 'Association is not causation. That is especially important here. 'We already know that some of the genetic variants that nudge people towards schizophrenia for example, overlap with variants that nudge people towards ALS. 'It may not be use of the medication that increases ALS risk, but that the need for the medication is a signal that someone is already at increased genetic risk.' The authors of the study, from various Scandinavian institutions, note that depression, anxiety, and sleep disturbances have been shown to have 'detrimental effects' on brain cells, resulting in 'structural brain change concurrent with ALS'. MND, which includes ALS, is a progressive disease that affects around 5,000 adults in the UK, and was famously suffered by the physicist Stephen Hawking. In the study, which was conducted in Sweden, experts looked at 1,057 patients with an average age of 67, who were diagnosed with the disease between January 2015 and July 2023, as well as medications they had taken. Researchers followed the patients for an average of 1.33 years after their diagnosis. They matched these patients with a group of healthy controls to look for differences that could contribute to the disease. Writing in the journal JAMA open network, the researchers found prescribed use of anxiolytics was associated with 34 per cent increased risk of developing MND. Taking antidepressants, meanwhile, was linked with a 26 per cent raised chance, and sedatives and sleeping pills 21 per cent. The use of antidepressants pre-diagnosis in particular was also associated with a faster rate of functional decline. Lead author, Dr Charilaos Chourpiliadis, said that more work still needs to be done to understand the link. However, he said: 'Closer monitoring in younger patients with psychiatric symptoms might lead to an earlier ALS diagnosis.' Dr Brian Dickie, chief scientist at MND Association also flagged that the study may be flawed, because the most common genetic risk factor for ALS—a repeat expansion in the C9orf72 gene—is most prevalent in the Scandinavian population. 'A study in the Swedish population will most likely have a higher proportion of people with this particular genetic form of the disease,' he explained. 'Not only would higher use of psychiatric medication be likely, but this genetic form is also linked with faster progression and shorter survival, which could explain the association between psychiatric medication and more aggressive disease.'


Daily Mail
3 days ago
- General
- Daily Mail
Cricket star Greg Blewett breaks his silence on the shattering phone call from his mum that changed both of their lives forever
Former Aussie cricket star Greg Blewett has for the first time recalled the harrowing phone call he received from his mother Shirley that changed their lives forever. Blewett, 53, was away at the time on a Cricketers Association Masters tour in 2014. 'I could tell something was wrong straight away,' he said. 'She said, "Honey, I've got MND", and she just broke down. I'll never forget that phone call. I obviously came home straight away.' Shockingly, within 12 months of her shock motor neurone disease diagnosis, Shirley Blewett was dead. She was only 69. Adding to the sadness was the fact Blewett - who played 46 Tests for Australia - never getting to say a final goodbye to his beloved mum. He raced to the hospital after receiving a call from his father - only to miss Shirley taking her last breath by a few minutes. Before her death, a brave Shirley refused to use voluntary assisted dying to end her suffering. While admiring her courage, it meant the Blewetts had to watch the family matriarch slowly deteriorate each day. 'We, like any family living with MND, we really struggled with it,' Blewett told News Corp. 'Seeing what Mum went through was brutal and absolutely heartbreaking. 'It's just hopeless, the slow deterioration and at times fast deterioration, it's just horrible.' Motor Neurone Disease is a rare neurodegenerative disorder that strips its victims of their independence, dignity and eventually, their voice. With no known cure, 2752 Australians are currently living with MND - and that figure is tipped to rise to over 4300 by 2050. Following his own MND prognosis, footy legend Neale Daniher has inspired countless fellow Aussies, raising more than $115million for drug and clinical trials. It is understood MND costs the Australian health system $27million a year.

News.com.au
3 days ago
- Business
- News.com.au
Peter Gelagotis Racing in drive to raise funds for motor neurone disease in month of June
Three-year-old stayer Thunder Zeus would contribute to one of Australian sport's greatest causes if he saluted at Flemington on Saturday. Thunder Zeus will carry the official FightMND silks as part of the Neale Daniher-inspired drive to raise funds for research into motor neurone disease. The King's Birthday weekend is the high point of FightMND's fundraising campaign as celebrities slide into icy water at Monday's AFL game between Collingwood and Melbourne. The Peter Gelagotis stable is doing its bit for the cause with all its runners to carry the FightMND colours during the month of June. Southside Racing and Racing Victoria will donate $1000 for each winner the stable prepares with the yellow and black silks this month. Stable manager Manny Gelagotis said the FightMND cause resonated with him in his capacity as the president of the Moe Lions Football Club. 'We're doing this in conjunction with the Moe Lions where Neale Daniher's son Ben has played for the last four or five years,' Gelagotis said. 'That's how the connection was made and I've got to know the family well.' Gelagotis said the Moe Lions would hold its annual FightMND fundraiser at its game on Saturday while Thunder Zeus hopefully fought out the finish of a three-year-old race over 2000m at Flemington. 'It's my passion to drive it through my two interests in racing and the footy club,' Gelagotis said. 'We've got many people like Peter Daicos, Nathan Buckley, Sam Kekovich and Denis Pagan that have all done videos for us to help raise awareness. 'The big event happens at Ted Summerton (Oval) on Saturday and it's turned into a really big thing because a lot of other leagues don't play on the long weekend so we get heaps of people coming from everywhere. 'Health-permitting, we hope Neale is going to be there but it's a day-to-day thing and it's been so powerful when he has made it in the past.' Thunder Zeus will head to Flemington as a last-start winner of a maiden over 2080m. Gelagotis said the son of Night Of Thunder was an improving young stayer with plenty of potential. 'He was too good for them at Cranbourne and he's getting better all the time,' Gelagotis said. 'He's going really well but it would be great to see the FightMND colours at Flemington to raise awareness with the racing people.'


Daily Mail
22-05-2025
- Health
- Daily Mail
Chilling video shows cruel impact of deadly motor neurone disease on 57 year-old's body in just a year
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.


BBC News
21-05-2025
- Health
- BBC News
NHS consultant with MND campaigns for more government funding
An NHS consultant with motor neurone disease said the condition had been "left behind" in research terms. Andrew Davies, from Hartley Witney in Hampshire, was diagnosed with the terminal illness last autumn and has been told he only has a few years to and his wife Milica are campaigning for more funding to find a treatment as they feel motor neurone disease (MND) has been overlooked compared to other illnesses. The Department of Health and Social Care said it would "continue to fund high-quality research" for MND. Mr Davies first noticed an "instability" in his ankle whilst on a family holiday and it then developed into "twitching muscles".Several months later he was told by doctors he had MND."It suddenly hit like a bombshell," he said."You step out of the diagnosis room and you meet the multi-disciplinary team, and then discussion is had about things like banking your voice [a process where individuals, often those with conditions affecting speech, record their voice to be used with communication aids]." Mrs Davies said the couple had "promised" their two children they would "seek a cure"."I think there's still an impression that it happens to a Rob Burrow, one person like that, every three months," she said."Well we need to know that in the UK, six Rob Burrows die every day of this disease".Rugby League player Rob Burrow raised about £15m for research in to MND, prior to his death from the condition last April, four universities, including the University of Oxford received £1m each to carry out research into MND thanks to a charity set up by late Rugby Union player Doddie Hallegger leads the MND project being run in Oxford."There are currently no treatments and I think it is really important to have more funding in to this kind of research," Dr Halleggar said.A spokesperson for the Department of Health and Social Care said: "Motor neurone disease has a devastating impact on people's lives and we are determined to find a cure". "We are grateful to campaigners like Andy for the amazing work they continue to do, despite the personal difficulties they are facing, and will continue to fund high-quality research into motor neurone disease through the National Institute for Health and Care Research". You can follow BBC Hampshire & Isle of Wight on Facebook, X (Twitter), or Instagram.