Latest news with #memoryloss
CBS News
3 days ago
- Health
- CBS News
Her mother gave her the genes for a rare form of dementia, but a Minnesota woman is fighting back
In the United States, one in three people face memory loss or dementia. In life, you never know what cards you'll be dealt. Linde Jacobs lost her mother in 2022, which makes being a mother to two young daughters tough. She's struggled with how to properly grieve and cope. She's struggling with making sure her daughters see strength and resilience. There's also the fear. Unlike most people, Jacobs knows what cards are in her own future. "I was speechless in that appointment," Jacobs recalled. "I had never been delivered news like that before. It was something so shocking that I really didn't know how to grasp it and internalize it." Aside from years of love, Jacobs' mother had also given her a cruel gene that causes a condition nearly impossible to diagnose. "She was boundary-less" Alison Lee was a proud mother of three girls, a successful physical therapist and a doting grandmother. But when she turned 50, life turned upside down. "Some of her impulses would be to touch people in public, so if she saw someone, she would go pull some guy's pants up because she said, 'I can see your underwear.' She was boundary-less, she didn't realize the social norms we place on what is appropriate," Jacobs said. Linde Jacobs WCCO Jacobs, a nurse herself, pounded doctors for information. She was told it was depression but she knew there was more. Meanwhile Lee's bizarre behavior continued. She started shoplifting, and after dodging a traffic stop she ended up in jail. Jacobs' sister received a letter from a fellow inmate saying, "your mom doesn't belong here, I think she has dementia." "It was affirmation, first time we had somebody look into this from a third party perspective and say this is dementia," Jacobs said. It was a diagnosis no doctor had given. Lee hadn't lost her memory but she had lost the mind she once had, and something clicked with Jacobs. Turns out, that inmate known only as "Angie" was right. That was 2018, and Jacobs still marvels at the gesture. "The incredible kindness of a stranger to know that not only did she recognize this, but she recognized my mom as being vulnerable and then kept her sane," Jacobs said. Jacobs now had a clear path thanks to a to a stranger she'd never be able to thank. But with the context of dementia, Jacobs was able to figure out a lot. She recalled that her grandmother had similar impulsive behaviors. It was genetic — it was the mapT mutation of frontal dementia known as FTD. It's a disease that hits at 50, and instead of losing memories, patients often lose impulse control and self-awareness. Linde Jacobs and her mother, Alison Lee Linde Jacobs "Honestly, I had a lot of guilt that I was so intolerant to those symptoms when my mom would display them," said Jacobs. Jacobs watched her mom progress; one day Lee fell and hit her head. Because of the FTD, her brain couldn't take the swelling and she died at 62, leaving devastation and frustration. "I had that understanding level while she was alive, this is not her, she is not doing this to me, this is happening because this disease is causing this symptom," Jacobs said. But she says it was hard to separate her mom from those symptoms. Amidst the grief, she learned that she and her two sisters had the gene, too. Jacobs said immediately, her mind went to her little girls. "Truly, that I passed it on to my daughters," she said. Jacobs realized that there was very little information about MapT. She could barely Google the condition that she was most certainly going to have. Then, she and her husband happened to see a documentary on gene editing. "And so he just Google searched "FTD, CRISPR," and then we came across a physician that's based out of San Francisco, Dr. Claire Clelland," said Jacobs. "It's just a matter of time" In a busy laboratory on the other side of the country, Clelland received an email. "I get contacted from patients, particularly gene carriers from around the world, but I remember just replying that I would try to help in the best way that I could," she said. That was the start of a powerful friendship. Jacobs set out on an advocacy journey across the nation, speaking to the nation's top neurologists and making them better understand this tricky and brutal disease that effects 40,000 Americans, essentially putting FTD on the map. Clelland said Jacobs' personal touch has fueled the process. "And if you look at new therapies that make it through the pipeline and actually get to patients, often, they have patient supporters and champions that don't give up even when the work gets really hard," Clelland said. And that hard work landed Jacobs on the front page of the New York Times. From her frustration, to her grief, to that inmate's letter, she laid out her story for the world to see, giving her even more opportunity for revelations like the one she had in February inside a University of Minnesota research lab. It's there she saw a mouse with the frontal temporal dementia mutation she has. That mouse is a symbol of hope. It's part of promising research at the University of Minnesota. "Linde sent me an email, she's actually the first FTD patient I've ever met," said Dr. Michael Koob, who is leading a team of researchers. Koob and his students are getting promising results for a treatment for people who know they have the gene. "So, so for her, it's just a matter of time. This is going to happen. You know, at this point, I'm fairly confident that there will be an intervention that is going to work," said Koob. From the mice to the microscopes, things are looking up. WCCO followed Jacobs and her pursuit for two months. During that time, she had another breakthrough. It came at a coffee shop in River Falls, Wisconsin. A reunion After years, Jacobs finally found the inmate who had sent her the initial letter about her mom. She messaged her on Facebook, and the two set up a time to meet. When Jacobs met Angela Olson, the tears welled. "I have no idea what the Lord is doing. I think it's amazing that he brought our lives together. I never realized, even writing that letter, what it was doing, right? I just knew that your mom was a really great person and needed help," said Olson. Angela Olson meets Linde Jacobs. WCCO As they marveled at the letter, they marveled at the moment. "I think there's so many times in life that, like, people are brought into our lives, right, for a poor purpose, right, and a bigger purpose," said Jacobs. "Yeah, she's actually the beginning of my journey with sobriety," said Olson. Olson knew the ropes when it came to jail; she was 20 years into her addiction. "Never, all these years, my whole life, I never understood how to have, actually, emotions. It's like I was rejected in my life, betrayed by people, but yet understand how to have love or emotion, and just was so suppressed. And so then I ended up coming to Teen Challenge," Olson said. Now she's seven years sober and thriving as a manager at Minnesota Adult and Teen Challenge Recovery program. She spends her days sharing her story. Olson recalled that Lee "just kept repeating herself." As a nurse herself, she had some experience with dementia. She marveled at the New York Times article with her letter in it. "Just reading how Linde said, you know, she was easily diagnosed by inmates before any doctor diagnosed this condition. And I was just, thank you, Lord," Olson said. "Thank you that something that I did would help this woman." Now, Jacobs has another partner in her fight to honor her mother and protect her daughters. She recently was invited to a gala in New York, with Anna Wintour of Vogue helping to lead fundraising. They raised $1.9 million dollars for frontal temporal lobe dementia.
Daily Mail
28-05-2025
- Business
- Daily Mail
First subtle sign of dementia that can strike 20 years before disease sets in - as experts discover the condition has a 'stealth phase'
Scientists have pinpointed subtle, telltale signs of the memory-robbing disease that can occur up to twenty years before the onslaught of classic symptoms strike. Problems with spatial awareness, like difficulty reading the sat nav or standing too close to other people, are thought to be the first signs of a future dementia diagnosis. Experts say these troubles often begin prior to the telltale brain damage appearing on scans. That's because, according to researchers from the Allen Institute for Brain Science in Seattle, the disease develops in two distinct phases, known as 'epochs'. The first so-called 'stealth' phase, which can begin decades before symptoms become obvious, involves damage to just a few vulnerable cells in the brain. And this typically happens in the part of the brain that's important for spatial navigation, Professor Michael Hornberger, dementia expert from the University of East Anglia, explained in a new report about the US research. 'This probably explains why losing your way can be among the first signs of Alzheimer's disease.' The second phase, sees a build up of the proteins tau and amyloid in the brain. Whilst most aging brains will have some level of both these proteins, a significant clump of them can for plaques and tangle—and this is thought to be behind dementia symptoms. This is when telltale signs of cognitive collapse that we commonly associate with dementia—including memory loss, language difficulties and problems with thinking and reasoning—appear. In the most recent Seattle study, scientists analysed the post-mortem brains of 84 donors, all of whom suffered Alzheimer's. The researchers used machine learning to track levels of tau and amyloid in the brain. The authors of the study found that even in donors with low levels of the problematic proteins, there were already signs of decay, with a number of crucial inhibitory neurons having been lost. Lead author Dr Mariano Gabitto, a professor of neuroscience at the institute said this decay could compound over time, resulting in further disruption, as the disease spreads to the middle temporal gyrus—the area responsible for language and memory. A previous study looking at the brain scans of more than 100 volunteers with a family history of Alzheimer's also found that those with higher levels of both proteins were more likely to suffer memory loss and shorter attention spans. Dr Gabitto explained to Science Focus: 'Identifying the earliest neurons lost could be crucial for developing therapeutic interventions to protect them and prevent further cognitive decline.' The researchers now want to ascertain whether this means they can accurately predict cognitive decline. They are confident that early intervention during the so-called 'stealth' phase could delay—or even prevent—the progression of the deadly disease. 'The disease's long pre-symptomatic and silent period creates opportunities for early detection, early intervention and even prevention of dementia symptoms,' Dr Igor Camargo Fontana, director of scientific conference programming at Alzheimer's Association, told Science Focus. Around 982,000 in the UK are thought to be living with dementia, according to Alzheimer's Association. Alzheimer's affects around six in 10 people with dementia. Memory problems, thinking and reasoning difficulties and language problems are common early symptoms of the condition, which then worsen over time. Dementia cases are expected to sky-rocket to 1.4million people by 2040, making a cheap screening tool vital to get to grips with the challenge. The disease cost the UK around £42billion in 2024 alone. The cost of dementia in the UK is forecast to be £90 billion in the next 15 years. While dementia can be caused by multiple health issues, it is most commonly triggered by Alzheimer's disease. Alzheimer's Research UK analysis found 74,261 people died from dementia in 2022 compared with 69,178 a year earlier, making it the country's biggest killer. It comes as scientists in South Korea discover a new possible cause for the early onset of the disease. Researchers found that suffering from metabolic syndrome increases a person's risk of early onset-dementia by a shocking 24 per cent. Metabolic syndrome is diagnosed when someone has three or more of the following conditions: belly fat, high blood pressure, high blood sugar, high triglycerides—a type of fat found in the blood—and low levels of 'good' cholesterol. But researchers found the risk climbed with every additional condition—people with all five had a 70 percent higher risk. Researchers didn't provide an explanation for the possible link, but obesity, high blood pressure and high blood sugar - especially in people with diabetes - have all been linked to an increased risk of dementia.
Daily Mail
28-05-2025
- General
- Daily Mail
Early warning signs I blamed on stress that were actually early-onset Alzheimer's in my forties
Rebecca Luna says she can't remember the previous day 'seven to eight times out of 10.' She occasionally blacks out in the middle of conversations with friends: 'It's almost like I'm not there, it's black, and it feels blank. It's a complete nothingness.' When she comes to, she doesn't know what she's just said or done. The mother-of -two has also forgotten to turn the stove off and unknowingly started her car. These lapses are all part of Luna's rare diagnosis: early-onset Alzheimer's disease. Her symptoms began two years ago, and she started seeing psychiatrists for her memory 'blips', which Luna first chalked up to perimenopause or her ADHD. Luna also suffered from alcoholism for years - she is now 15 years sober - and feared her lapses could be repercussions of her addiction. It wasn't until a neurologist administered a two-hour cognitive test, which she failed, and took detailed MRI scans, that she learned the truth nine months ago. The Canadian native has grappled with the knowledge that the neurodegenerative disease will rob her of time with her children and has had to explain to them that, given her diagnosis, the mother they know her as will likely begin to disappear within a few years. Early-onset Alzheimer's is more progressive, with a shorter life expectancy of about eight years from diagnosis. Luna said: 'It's really hard to think about that stuff because I am in denial. So when my brain is like, let's look at the facts, sometimes I look at my neurology documentation with all the scientific facts – they're not just out of nowhere, they're not perimenopause. 'I have to look at that stuff to make it real for myself because I just love gaslighting myself… It is a progressive illness. We're catching it super early, which is amazing, but there is no cure.' Luna had noticed a growing number of troubling instances over around two years in which she couldn't remember doing basic, everyday tasks. One day, she returned to her car in the gym parking lot and realized she couldn't find her keys. She checked around and underneath the car and even looked on the roof, thinking she had left them there like she'd done in the past with her coffee. Then, she realized: the car was running, and the keys were in the ignition. She had already gotten in the car and turned it on but it didn't register. 'My car was on that whole time. I had completely blanked out the process of getting in, putting the key in, and turning the ignition on,' she told Yahoo!. Another time, she began boiling an egg on the stove, forgot about it, and left home for about half hour. When she eventually realized what she had done, she ran home to find her kitchen filled with smoke. 'So, it literally almost caught my house on fire,' she said. Luna's psychiatrist administered several cognitive tests, which ask people to recall words, name objects, follow simple instructions, or draw shapes. Doctors also check for memory, language, and problem-solving skills. She failed all of them. Nine months ago, when she went to a neurologist for specialized care to confirm what the tests had found, she underwent a more expansive series of tests assessing her memory, attention, language, reasoning, visual-spatial skills, and emotional health. Each test in the neurological evaluation has its own scoring system based on what is normal for a person's age beyond just looking at whether the patient scored high or low on a test. At the end, the doctor reviews all of the individual test scores to spot certain patterns, such as an usually low memory score with normal attention and language skills. This helps the doctor spot signs their patient is dealing with Alzheimer's specifically, the type of dementia whose first symptom is memory problems. Luna said: 'Then he looked at my MRIs, looked at other things noted by the psychiatrist, and he just walked in with pamphlets of early-onset Alzheimer's. 'There was no diagnosis at that time. This was his suspicion.' Further testing, including her medial temporal atrophy (MTA) score, which is a diagnostic tool for dementia, led to a diagnosis of early-onset Alzheimer's. Early-onset Alzheimer's affects a small subset of the population diagnosed with this memory-robbing form of dementia caused by shrinking brain tissue. Just five percent of the nearly 7million Americans with the disease are diagnosed between the ages of 45 and 65, well before the average diagnosis age of 80. Early-onset Alzheimer's is not typical Alzheimer's disease at a younger age. It often runs in families. In some cases, it's passed down directly from parent to child, while in others, people may inherit a mix of genes that increase their risk. The disease tends to progress faster in people with an early-onset diagnosis compared to those who develop it later in life. Even after accounting for the general risks of aging, people with early-onset Alzheimer's have a higher risk of dying compared to those with late-onset or typical Alzheimer's. This causes a significant number of premature deaths in adults aged 40 to 64 caused by complications due to Alzheimer's, like infections, seizures, and pneumonia caused by food or liquid enters the lungs instead of the esophagus. The wide variety of causes of death means quantifying the annual death toll linked to the condition is difficult to pin down. Still, about 120,000 people with Alzheimer's, both typical and early-onset, died in 2022 (the most recent year for which data is available). While early-onset Alzheimer's if often hereditary, Luna did not say whether she has a family history of the condition. Additionally, people with early-onset Alzheimer's often go about 1.6 years longer before getting diagnosed than those with late-onset Alzheimer's, likely because symptoms are missed or doctors take more time to evaluate younger patients. Following her diagnosis, Luna's family, including her daughter and mother, is in denial. She said: 'About two months ago, I sent her [my mother] the [doctor's] clinical notes where he's put Alzheimer's on it. And she lost it then because I think she wasn't believing it until she saw it on a piece of paper. 'It's so weird. I make fun of it all the time because that's just generally who I am. I like to keep things kind of light and funny. It's important for me to make fun of myself, to keep the morale high for the people around me, but I also need it because it is so serious. 'I could totally take this and just go on an isolation/depression bender, and I do not want to do that.' Luna began a TikTok account where she updates her 29,000 followers about her symptoms, her daily life, and her tips for self-care. She has found a community on the site and many helpful tips from people in the comments section enduring similar diagnoses or helping a loved one cope. Some of the best she has heard and implemented is minimizing clutter in her home, making playlists of songs that bring her back to herself, and journaling during the day, 'because what's one of my new things is I shower and then two hours later I feel like I need to have a shower.' She added: 'If you are a loved one [of someone with Alzheimer's], my suggestion is to meet them where they're at. 'What I've found really helpful with my partner is not to be questioned but reminded, and to just believe them. And give them a hug. Tell them you love them. Because really, if I'm being completely honest, what I need is a hug from my family.'
Daily Mail
26-05-2025
- Entertainment
- Daily Mail
Warwick Capper's partner reveals the shattering moment over his son that proved the footy cult hero has a devastating health problem
Warwick Capper, once the flamboyant poster boy of the Sydney Swans, is confronting a far more sobering chapter in his life. Now 61, Capper's memory is fading, and his partner Lisa Arocca has shared the moment that brought everything crashing into focus. The pair were in an Uber on the Gold Coast when the driver asked who they were visiting. Capper replied, 'My son, Indiana.' Then the driver asked where Indiana lived. Capper paused, looked at Arocca and said, 'I can't remember.' In that moment, the man once known as 'The Wiz' realised something was wrong. 'Maybe I have got a problem,' he told her. For Arocca, it was devastating. 'This was bad because one thing Warwick had was a strong memory. He remembered everything,' she told News Corp. Now, Capper forgets names, repeats stories and at times can't follow his own train of thought. 'I can still remember most of the games. But sometimes I forget people's names,' he said. Capper has been through it all. football fame, nightclub tours and even ventures into politics and adult film. But now, the repeated stories and blank expressions suggest something far more serious than ageing. 'I started going downhill a bit I think about seven or eight years ago. I'm just not quite as switched on' he said. He now keeps notes in his phone to track each day. 'I write my whole day now, in my phone, so I don't forget,' Capper said. His speech is often disjointed. His behaviour has at times become erratic. And Capper was recently banned from AFL venues for six months for being 'rude to a girl' at the MCG. Capper, who is displaying the worrying symptoms of chronic traumatic encephalopathy (CTE), speaks openly of head knocks. 'I got knocked right out. Didn't know where I f***ing' was though,' he said. He reflects on the times when players were told to 'just give it a rub' and keep going. He's not alone. Capper lists friends like John Barnes, Greg Williams, and John Platten who are also suffering. 'He's the worst I've seen, he thinks he's Ron Barassi' he says of Platten. Capper tells those same stories repeatedly, often forgetting he's just told them. Despite undergoing cognitive tests through the AFL's concussion program, Capper says he was informally told his results were 'pretty bad.' But there's been no official diagnosis, no follow-up. 'Not great,' the examiner had said. Arocca notices the changes every day. She once asked him to leave bags of clothing in the hall to donate. An hour later, Capper threw them all in the bin. 'He had a blank look on his face,' she said. 'In spurts he is fine, and then he isn't.' Though many see his outlandish public persona, Arocca sees the gentle man behind it. 'He has a heart of gold,' she said. 'But I know he doesn't want to admit all this. It's really sad.' Capper is now on the path to becoming a grandfather. But the road to reconciliation with son Indiana has been rough. The pair once had a falling out, with Indiana accusing him of being 'a disgrace.' But today, they're back in touch. Capper's longtime manager, Peter Jess, is furious at how the AFL has treated him. 'They should have wrapped their arms around him and got him proper treatment,' Jess said. 'They're just waiting for these guys to fall off the perch.' Jess believes Capper's behaviour is a sign of frontal lobe damage. He's pushing for the AFL to fund an $8000 MEG scan for Capper. 'This is not the real Warwick,' he said. 'It's f***ing frightening.' Capper, meanwhile, isn't complaining about his decline just yet. 'I'm not in a wheelchair yet,' he said. He still works the pub circuit, still tells his stories, still flashes that same blond-haired bravado. But the sparkle is dimmer now. 'He's always been a bit radical,' Arocca said. 'But now it is a constant rollercoaster ride of being forgetful.' She's holding on, though. 'I just take it day by day.'
Daily Mail
24-05-2025
- Entertainment
- Daily Mail
Billy Joel admits he has been forgetting song lyrics for at least a decade as star, 76, reveals brain disorder diagnosis and cancels all concerts
Billy Joel has been forgetting lyrics for at least a decade, it was revealed today, after he announced he was having to cancel all planned concerts due to a brain disorder. The Piano Man singer, 76, took to Instagram on Friday to share that he has been diagnosed with normal pressure hydrocephalus (NPH). The condition has impacted Joel's 'hearing, vision, and balance,' according to the social media post. A spokesperson for the singer said that his condition had been 'exacerbated' by recent performances. He is now taking a break and undergoing 'physical therapy' to treat the condition. Normal pressure hydrocephalus is caused by too much fluid collecting in the ventricles, or spaces in the brain and spinal cord, putting pressure on these areas and triggering its symptoms, including struggling to walk, an inability to control the bladder and memory problems. This happens because the excess fluid compresses and stretches the brain tissue, interfering with the control of muscles and communication between nerve cells. Worried fans rushed to support the singer online after the announcement, which comes three months after Joel fell over while performing on stage in Connecticut. It can now be revealed that Joel has admitted to struggling with memory problems going back more than a decade - after he famously forgot the words while singing We Didn't Start The Fire at Toronto's Air Canada Centre on March 9, 2014. At the time, he told the audience the song is 'one of the worst melodies I ever wrote', and even stopped his band completely before fans cheered him on to complete the track. Halting the performance, Joel said: 'Wait a minute. That ain't right. All you gotta do is f*** up one word in that song and it's a train wreck.' In an interview in 2023, Joel hinted it wasn't a one-off, admitting he relied on the audience to make sure he as singing the right words to songs. Speaking to Zoe Ball on BBC 2 radio's breakfast show, he said: 'Sometimes I'm watching people sing along, hoping they'll guide me.' Addressing the Toronto incident, he added: 'I was in Toronto, and I forgot the words. And then I just stopped the song. "Stop the music! Stop..." And the crowd made this noise like, "Ahhhh..." So it's, you know, it's walking on a tightrope with that thing.' When diagnosed early, NPH can often be effectively treated with surgery that drains excess fluid from the brain, relieving pressure and symptoms - but it can often be mistaken at an early stage for other illnesses such as dementia. However, if left untreated, the condition may lead to permanent damage in its later stages. The legendary musician also expressed his gratitude for the care he's receiving and thanked fans for their continued support. He paused the concert in 2014 and told fans it was 'one of the worst melodies I ever wrote' 'I'm sincerely sorry to disappoint our audience, and thank you for understanding,' Joel wrote on Instagram. 'Billy is thankful for the excellent care he is receiving and is fully committed to prioritizing his health,' the statement added. It continued, 'He is grateful for the support from fans during this time and looks forward to the day when he can once again take the stage.' Fans won't need to take any steps to receive a refund - payments will be automatically returned to the original form of purchase. The cancellations come after Joel sparked concern among fans after he fell over at a concert in February, prompting him to delay his tour by four months. Joel suffered the nasty fall on stage during a gig at the Mohegan Sun resort in Monteville, Connecticut, sparking major fear amongst fans. Footage from the show captures the Grammy winner spinning a microphone stand before hurling it across the stage - only to suddenly topple over moments later. The musician was helped up by his band managed to carry on with the rest of the show and sang one more song for his fans. One attendee said: 'He looked frail hobbling across the stage. At one point, he was using the microphone stand as a cane. 'I was really very concerned about him throughout the concert.' Billy's illustrious career as a musician began back in the mid-1960, which led to the release of debut studio album, Cold Spring Harbor (1971). But it failed to gain any real traction until after the success of his follow-up, Piano Man (1973), that peaked at number 25 on the US Billboard Hot 100 and number four on the Adult Contemporary singles chart. Now an established name on the musical landscape, Joel became a million seller with the release of Streetlife Serenade (1974), but his commercial breakout making him a bonafide star came with the release of The Stranger (1977), which featured the hit singles Movin' Out (Anthony's Song), Just The Way You Are, She's Always a Woman, The Stranger, and Only The Good Die Young. He would go on to release a 13th album - Fantasies & Delusions (2001) - that features classical compositions from Joel, a first for him during his career. With over 160 million records sold worldwide, Billy Joel is one of the world's best-selling musical artists, and the fourth-best-selling solo artist in the United States.
