Latest news with #neurologicaldisorder
Daily Mail
2 days ago
- Health
- Daily Mail
Woman, 21, forced to 'glue eyelids open' just so she can see due to rare condition - but doctors say there's no cure
A woman who thought she had bad hayfever was diagnosed with a rare condition that means she sometimes has to use glue and tape just to keep her eyes open. Tia-Leigh Streamer, 21, from Dorset was baffled when she woke up in May 2023 with a drooping eyelid. Initially assuming it was seasonal allergies, it wasn't until months later that she was revealed to suffer with a disorder - blepharospasm - which causes muscles around the eyelids develop an involuntary spasm and cause the lids to twitch, flutter or blink uncontrollably. Doctors at Royal Bournemouth hospital trialled Botox injections in her eyelids in March last year, and since then she hasn't been able to open her eyes without the jabs. When the Botox wears off, the only way she can see is by taping and gluing her eyelids or holding her eyes open with her hands. Even when the jabs are effective, sunlight, car headlights and computer screens can trigger Tia-Leigh's eyes to close. In severe cases sufferers may be unable to open their eyes due to excessive eyelid spasm. Doctors do not have a cure but are continuing to trial different volumes of Botox in her eyelids. 'I have the same level of sight as a visually impaired person but I've got nothing wrong with my eyesight,' Tia-Leigh, who was an aspiring trainee accountant, explained. 'I know it's neurological but they don't know what causes it which makes it worse for me, because if they could say it's caused from this, I think it would make me feel slightly less in the dark. 'To be told I've got this for the rest of my life and not know why is a hard thing to deal with.' She admitted she's 'not been coping very well' and was prescribed antidepressants half-way through the ordeal. 'I didn't get along with them,' she continued. 'I tried therapy, I've tried hypnotherapy but nothing was helping. 'The longer it's gone on I've gotten used to it but there are still days where I get really down about it. Especially as the Botox runs out.' Tia-Leigh added that the longer she grapples with the condition, the more her body will get used to the injections and 'it won't work anymore'. 'I have them done every eight to 10 weeks at the moment. It was 12 weeks. But I only get about three to five weeks where it actually takes any effect,' she remarked. 'The rest of the time I have to physically hold my eyelids open to be able to see anything. 'When I glue or tape them open I can't blink at all. The doctors have said the longer I do that for then I've got more chance of actually damaging my eyes and then possibly losing my sight, which I don't want to do.' Tia-Leigh has even had bruises on her eyelids from the tape before. 'It's hard,' she admitted. 'Because I've either got no sight or one hand essentially.' Tia-Leigh was training to become an accountant, but has had to stop working because of her condition - ruining the plans she had for her life. 'As soon as I got ill I was basically told that this was something that I could never do because of the computer screens,' she explained. 'It was awful to be honest, I had everything planned out. I was training to do that and I was saving to move out and get married and have children and it was all taken away from me. What is blepharospasm? According to the National Eye Institute, blepharospasm (also called benign essential blepharospasm) is 'blinking or other eyelid movements, like twitching, that you can't control'. 'Eyelid twitching usually goes away on its own. But people with benign essential blepharospasm can develop severe and chronic (long-term) eyelid twitching,' the site explained. Symptoms usually start with 'small eyelid twitches that happen every once in a while'. This can increase overtime and often cause the eyes to close completely. In some cases, people also get twitches in other parts of their face. It added: 'Blepharospasm happens when the part of the brain that controls your eyelid muscles stops working correctly. 'Sometimes blepharospasm runs in families, and women ages 40 to 60 are more likely to develop it. But in most cases, doctors aren't sure what causes it.' Treatment options include Botox injections and in some cases a surgery called a myectomy - where muscle nerve tissue is removed from the eyelid - can be recommended to alleviate symptoms. The NEI recommends seeing an eye doctor if: Source: NEI 'It's the stress of it as well that makes it worse. Anytime I'm really stressed it will make my eyes closed and accounting, I found it really stressful.' For her, the biggest struggle is loss of freedom and independence. She can't go out by herself if her eyes are closed, unless someone can drop her off. Tia-Leigh avoids solo outings because she gets 'too anxious not being able to see it'. 'I'm basically inside most of the time,' she said. 'It stops me doing things I enjoy. I used to do a lot of crocheting but you need to have two hands to do that so I can't do that even when I'm at home. 'I can't go down and make my dinner because I've got one hand so I'm restricted to what I can and can't make.' Furthermore, she gas to ask her family to make her meals, and sometimes cut her food up for her. 'It's like I'm going back to being a child again because I can't use a knife and fork and see what I'm doing,' the 20-year-old added. Tia-Leigh got married in December 2024 and had to time her Botox injections to ensure she could see on her wedding day. 'I wanted to make sure that I had the Botox two weeks before my wedding because it takes my eyes about a week to open after I've had it done,' she explained. 'It was a scary day and I think that's one of the reasons that prompted us to get married so quickly. 'I wanted to make sure I was going to be able to get married and be able to have my eyes open to see what's going on.' Another future concern is having a baby in the future. 'I often have nightmares about it to be honest because even when I have Botox done, at night-time my eyes don't open,' she continued. 'Night-time is the worst, they just won't open at all. I have nightmares about a baby next to me and it's crying and I can't wake my husband up and I can't get around to help because of my eyes. 'I do know now there are things that can be put in place to help because obviously people who are blind all the time still have children.' The current solution relies on a trial and error year plan from her doctor. 'He's going to change the volume of the Botox in the top and bottom lid of my eyes,' Tia-Leigh said. 'He might change slightly where he puts the injections and he's going to be monitoring it and seeing how long it lasts. 'It's about hoping he'll be able to find a better balance so we can have some longer effects out of the Botox.' She has been documenting her experiences on TikTok, where Tia-Leigh has more than 3,700 followers.
Telegraph
4 days ago
- Entertainment
- Telegraph
A-ha singer Morten Harket has Parkinson's disease
The lead singer of A-ha has revealed he has been diagnosed with Parkinson's disease. Morten Harket, the Norwegian synth-pop band 's frontman, released a statement on Wednesday about his diagnosis of the progressive neurological disorder and its effect on his career. The Take On Me singer, 65, admitted he was 'uncertain' about his future as a vocalist as he was 'trying the best I can to prevent my entire system from going into decline'. Harket, a father of five, underwent several rounds of brain surgery last year to manage his physical symptoms of the condition. A lengthy statement published on the band's website on Wednesday, written by their biographer, read: 'In recent years, Morten Harket has also been a man battling his own body. 'This isn't the sort of news anyone wants to deliver to the world, but here it is: Morten has Parkinson's disease.' Harket told the biographer Jan Omdahl that he had wanted to reveal his condition to fans earlier, but that his need for 'peace and quiet to work has been stopping me'. He added that 'problems with my voice are one of many grounds for uncertainty about my creative future'. Symptoms of Parkinson's, which is the fastest-growing neurological condition in the world, include tremor, slowness of movement and muscle rigidity. It is caused by the death of nerve cells in the brain that produce the neurotransmitter dopamine. About 153,000 people in the UK have Parkinson's, but cases are predicted to rise to 172,000 by 2030 as the population ages. 'Managing side effects of medication' 'It's a difficult balancing act between taking the medication and managing its side effects,' Harket explained. 'There's so much to weigh up when you're emulating the masterful way the body handles every complex movement, or social matters and invitations, or day-to-day life in general.' The brand's frontman, who has been performing since the 1980s, said that at the moment, he did not 'feel like singing', explaining that 'for me, that's a sign'. He added: 'I'm broad-minded in terms of what I think works; I don't expect to be able to achieve full technical control. 'The question is whether I can express myself with my voice. As things stand now, that's out of the question. But I don't know whether I'll be able to manage it at some point in the future.' Harket said he had 'taken to heart my 94-year-old father's attitude to the way the organism gradually surrenders: 'I use whatever works''. However, the musician has been making use of advanced technology in treating the disease, including using a method called deep brain stimulation (DBS). The neurosurgical procedure, which he had done in June and December last year, included implanting electrodes into the two sides of his brain. A-ha's biographer wrote that these surgeries 'led to a dramatic improvement in his symptoms'. 'The procedure had the desired effect: with the right electrical impulses now reaching Morten's brain, many of his physical symptoms practically vanished,' Mr Omdahl added. Harket's neurologist in Norway, Dr Christina Sundal, was previously a research fellow with the Parkinson's team at the Mayo Clinic. Mr Omdahl, who observed the lead singer at his summer home in Norway, described the symptoms as a 'never-ending roller-coaster ride'. Discussing his future as A-ha's vocalist, Harket said he 'can't answer' whether his voice is the best he could hope for following the DBS treatments. Impact of dopamine The vocalist, who is known for his unique singing voice and technique, explained: 'When we tune the frequencies and direction of the electrodes, it is also able to affect the region of the voice, but we're not yet able to capture and control it. 'The voice problem comes especially when I take dopamine supplements. If I don't take dopamine, my voice settles down – but then the general underlying symptoms become more pronounced.' The band, which was formed in Oslo in 1982, comprises guitarist Paul Waaktaar-Savoy, keyboardist Magne Furuholmen and lead singer Harket. A-ha have had nine top 10 singles in the UK chart, including the chart-topping track The Sun Always Shines on TV, and seven top 10 albums. Furuholmen said in an Instagram post on Wednesday: 'It is a day of sad news in A-ha world. Having known about Morten's diagnosis for some time does not take the force out of the blow, nor diminish the impact it has had, and will continue to have, on us – as people and as a band. 'Our thoughts are first and foremost with Morten and his family at a difficult time adjusting to the changes that this condition has brought into their lives. 'As the news brings sadness, it is worth to remember through the hurt that there is also a lot of gratitude: for all the amazing memories, for how our combined creative efforts as a band have been so generously embraced by the world, and for how lucky we are that people continue to find meaning, hope and joy in our shared musical legacy. 'All future A-ha-related activities will, of course, be tuned to suit Morten's situation, but together we will work to try and find ways to give you the best of ourselves. Thank you, everyone, for all your support, your kind words and consideration.'
Daily Mail
19-05-2025
- Entertainment
- Daily Mail
Michael Klim doesn't look like this anymore! Swimmer reveals surprising makeover as he shares up date on the rare autoimmune disorder which left him unable to walk
Michael Klim has shared an update on his health - and his new look. The Aussie swimming legend, 47, was diagnosed with the neurological disorder chronic inflammatory demyelinating polyneuropathy (CIDP) in 2020 and told The Project on Monday that he was doing well. He also revealed his makeover, including a busy moustache and a goatee, both in a salt and pepper tone, which is a far cry from usually clean shaven face. 'I'm mixing it up. I had one look for 47 years. I had to come up with something different' the athlete joked. Asked how he was doing in terms of his health battle, Michael was optimistic. 'I'm feeling really well. My life has stabilised physically and mentally' he explained, before answering a question on whether he was in any pain. 'My mobility is compromised. But I've got some great AFOs, are kind of prosthetics. Some of my favourite things like surfing and playing tennis are out of the question, but I had a ski for the first time in 12 years last year' he said. Michael said there were 'a lot of things' he couldn't do, but many he could, and added that he was now focused on his foundation, The KLIM Foundation, which is raising funds and awareness for CIDP. 'With the foundation, it's what we're trying to do, enable a lot of sufferers, give them their life back' he said. 'Not only can we do it through blood donations, AFOs, having the right physio, having that support, and also counselling.' Michael said counselling was a big part of what brought him 'Mentally coming out of the hole and realising that life still had a lot to give was probably the biggest win for me' he said. The star earlier revealed that his biggest battle has been mental, not physical, as he grapples with a rare autoimmune disorder which left him unable to walk. He told The Sunday Project that the 'mental toughness' he had as an athlete is something he had to rediscover to cope with his physical ailments. 'Pretty much all athletes are taught physically, mentally you push on. Even after sport, I adopted that same mindset,' he said. 'For me to be more vulnerable and listening to my body and my emotion is something that I'm still learning to do better and something that's helped me a lot. He added: 'The biggest thing I had to overcome was accepting the new identity. I'm still in a lot of people's eyes the swimmer guy. And I used to rely on my physicality to give me a lot of mental toughness. 'Now that physicality is actually gone, I need to find other mental strength to overcome physical disabilities.' Michael went on to say that as his illness progresses, he has grown to value time with his family above all else. 'It's actually changed my perspective on life. I really sort of value the time I have with my kids a lot more than I used to,' he said. 'It's brought my family much closer together. It's reignited a lot of friendships and relationships that I had in my life.' Michael recently shared the devastating details of his 'tough' battle with CIDP. The former Olympian has spoken openly about the challenging diagnosis, which saw him lose the ability to walk in just six months and left him bedridden. CIDP causes the body to attack its own tissue - the myelin sheaths which insulate and protect the nerves - causing weakness and lack of feeling in the arms and legs. Klim has detailed his 'tough' four-year battle with the disorder and spoke about the mental challenge of going from being an Olympian to not being able to walk. Speaking at Drew Barrymore and Wanderlust's True North event in Sydney, Klim explained how his leg muscles began 'disappearing' as he deteriorated. 'I had a lot of neural symptoms early on - most people would get cold feet at nighttime or you'd get a tingling on your quad - but I started getting these random feelings in my legs and they started progressing and getting worse,' he shared. 'Towards the end, my legs would give way on me when I was walking back. All my other aches and pains started popping up even more, affecting my everyday lifestyle from my ankle to my back. 'I just almost got tipped over the edge, and within six months, I could not walk. I lost all functionality from the knees down, my muscles were literally just disappearing. 'As many races as I wanted to do, nothing was making them go and activating those muscles.' Klim - who is now able to walk with the assistance of a cane - admitted the diagnosis also took a mental toll as he struggled to come to terms with his physical symptoms. 'It was really confronting mentally, not just physically,' he explained while speaking to press ahead of actress Drew's talk event at the ICC Theatre. 'I could look down and see these sticks hanging off my body, which for someone that used to pride myself on my physical ability, that was taken away within six months.' Klim undergoes rehabilitation including plasma treatment, which has helped him to become more mobile by reducing inflammation and restoring nerve damage. 'The last two years have been OK, but the first two were pretty tough,' he confessed as he discussed the challenges of being diagnosed amid the Covid-19 pandemic. He also praised his girlfriend Michelle Owen for her support as he admitted it has been a difficult journey. Klim first unveiled his romance with DJ Michelle in October 2019, three years after his split from his model ex-wife Lindy Klim in 2016 after 10 years of marriage. Swimmer Klim is arguably best known for his huge triumph at the 2000 Sydney Olympic Games, where he took home gold for Australia. In the 4x200m freestyle relay, Klim sent crowds wild when he broke the world record in the first leg of the race, setting his team up for triumph. Alongside Ian Thorpe, Chris Fydler and Ashley Callus, Klim took the gold medal home, with the previously unbeaten Americans instead nabbing the silver. The highly-regarded athlete retired from competitive swimming in 2007 and runs a successful swim school business in Bali.
Daily Mail
12-05-2025
- Entertainment
- Daily Mail
Chris Kamara reveals heartbreaking reason why he apologised to his wife - after battle with speech apraxia forced the former footballer off TV screens
Chris Kamara has opened up on why he apologised to his wife Anne after being diagnosed with apraxia. Kamara has endured a tortured journey with speech apraxia - a rare neurological condition that affects your ability to speak - that has resulted in him stepping away from several broadcasting roles. The 67-year-old was one of the game's most amusing and beloved personalities during his 20-year tenure in front of the cameras and most notably on Sky Sports News where he shared a memorable relationship with Jeff Stelling. But 2022 saw Kamara heartbreakingly forced to give up his profession after he received a diagnosis for speech apraxia, a rare neurological disorder which left him slurring his words. Apraxia is a little-understood condition that affects the body's ability to perform natural motor functions and Kamara has undergone intense speech therapy in a bid to get back on screen. Kamara has now revealed that he didn't reach out to his family, including wife Anne, after first feeling symptoms of the condition. 'They spotted the signs (that I was struggling). I should have talked to my wife Anne, for which I have apologised to her. I didn't tell my wife what was going on,' he said. 'My family would have supported me rather than somebody I didn't know, Anne, and my sons would have helped me in the first place.' On the therapy he has been undergoing, the former midfielder added: 'I kept thinking, for over 18 months, that it would go away. I just kept thinking one day I'll wake up and I'll be back to the person I was. 'But I have accepted the way I speak now. And that's because of the work on my mental health. 'My therapist told me that the day you accept your condition is the day you will start getting better, and that is what happened. I can be my own worst critic but my speech has improved and I'm fine with how I sound.' On Boxing Day Kamara returned to broadcasting as he provided coverage of the game between Nottingham Forest and Tottenham for Amazon Prime Video. Kamara had a lengthy playing career which saw him represent clubs including Portsmouth, Swindon, Brentford and Leeds. He also had spells as manager of Bradford and Stoke. As well as his work on Soccer Saturday, Kamara also presented Goals on Sunday for Sky Sports.
The Guardian
08-05-2025
- Health
- The Guardian
Canada medical mystery takes twist as study finds no evidence of brain illness
A new peer-reviewed scientific study has found no evidence of a mystery brain disease in the Canadian province of New Brunswick, suggesting instead a troubling combination of 'misdiagnosis and misinformation'. The research comes as the Maritime province prepares its own assessment of more than 220 suspected cases, in the hope of giving families some answers to a medical mystery that has gripped the region for years. The report published on Wednesday in the Journal of the American Medical Association, known as Jama, is an independent reassessment of 25 cases diagnosed by Moncton-based neurologist Alier Marrero from within the broader sample of 222 patients. The authors, affiliated with the University of Toronto, New Brunswick's Horizon health network and other Canadian institutions, found that those within the cohort were misdiagnosed and had common neurodegenerative diseases, such as Alzheimer's and Parkinson's, functional neurological disorder, traumatic brain injury and metastatic cancer. The findings, however, are unlikely to tamp down speculation from families that the report once again ignores their suspicions of environmental contamination in the region. Health officials in New Brunswick first warned in 2021 that more than 40 residents were suffering from a possible unknown neurological syndrome, with symptoms similar to those of the degenerative brain disorder Creutzfeldt-Jakob disease. Those cases were referred to Marrero after the initial physicians were initially stumped by the symptoms displayed by their parents. A year later, however, an independent oversight committee created by the province determined that the group of patients had most likely been misdiagnosed and were suffering from known illnesses such as cancer and dementia. A final report from the committee, which concluded there was no 'cluster' of people suffering from an unknown brain syndrome, signalled the end of the province's investigation. But earlier that year, the Guardian reported that a top federal scientist worried there was 'something real going on' in New Brunswick. Another said the investigation 'was shut down' and that caseloads were higher than officially acknowledged. 'I don't think it is helpful to suggest or point to who or why – suffice to say that we were prepared to marshal both financial and human scientific resources to tackle the mystery, but they were declined,' the scientist wrote. According to a February 2025 letter Marrero wrote to federal and provincial officials, seen by the Guardian, the number of patients suffering from unexplained neurological symptoms has since jumped to 507 across New Brunswick, Nova Scotia, Prince Edward Island Newfoundland, Ontario, Quebec and Alberta. Several under the age of 45. The new study found that 'well-known conditions were identified in all 25 cases, including common neurodegenerative diseases, functional neurological disorder, traumatic brain injury and metastatic cancer,' adding that a study of 11 autopsy cases led to the conclustion that 'a new disease was extremely unlikely, with a probability less than .001'. Patient advocacy groups have rejected the idea of a new 'mystery illness', instead arguing that the cases are linked by environmental contaminants. But the researchers say they do not believe the patients were made ill by exposure to something in the environment, such as herbicides or heavy metals like mercury. They determined that 'misdiagnosis and misinformation become inextricably entwined and amplify harm exponentially', noting that more than half of the people eligible for the study declined to participate. They also blamed 'inaccurate clinical assessments and an over-reliance on ancillary testing' for perpetuating the idea of a 'mystery illness' and said they found 'meaningful discrepancies' in case histories. Marrero said in a statement he is 'in profound disagreement with the study conclusions' and has 'many questions regarding the methods and the content', adding that he was 'appalled' that an investigation with a 'small number' of patients has been conducted without his knowledge. Susan Holt, the province's premier, pledged a fresh and 'thorough' investigation after taking office last last year. 'I think we need to be doing everything we can to shed some light on this and find a way to stop what's making people sick,' she said at the time. New Brunswick's chief medical officer of health Dr. Yves Léger, said in a statement the Jama study doesn't change his office's intention to complete its own investigation into the 222 cases, which Marrero has officially referred to the province. Updates will be posted on the province's new website, and a public report with recommendations is expected in the coming months.
