Eric Dane is ‘angry' over ‘very good chance' he will be taken from his daughters

Eric Dane is sharing details about his Amyotrophic Lateral Sclerosis, or ALS, diagnosis.
During a conversation with Diane Sawyer on 'Good Morning America' the 'Grey's Anatomy' actor shared that he only has 'one functioning arm.'
'My left side is functioning, my right side has completely stopped working,' the 52-year-old told Sawyer, adding that his left arm has been getting increasingly weaker. 'I feel like maybe a couple more months and I won't have my left hand either. It's sobering.'
The weakness in his right hand was one of the first ALS symptoms he began having a year and a half ago, Dane explained. Dane received his ALS diagnosis in April after nine months of testing.
Dane explained that he initially didn't think much about the weakness in his right hand at the time, chalking it up to 'texting too much or my hand was fatigued.'
'But a few weeks later I noticed it got a little worse,' Dane continued telling Sawyer. 'So I went and saw a hand specialist, who sent me to another hand specialist. I went and saw a neurologist and the neurologist sent me to another neurologist and said, 'This is way above my pay grade.''
After being diagnosed with what Johns Hopkins describes as the incurable 'fatal type of motor neuron disease,' Dane said he 'will never forget those three letters.'
'It's on me the second I wake up. It's not a dream,' the 'Euphoria' actor continued.
Although Dane still has use of his legs, he told Sawyer that he worries about losing his leg function as well, recalling a moment he was snorkeling with one of his daughters he shares with his wife Rebecca Gayheart.
According to Dane, he was snorkeling with his daughter when he was unable to swim back to the boat on his own.
'She dragged me back to the boat,' Dane told Sawyer. 'I was like, breaking down in tears. I made sure she got back to the water with her friend and continued on with the snorkeling. I was just heartbroken.'
'I'm angry because my father was taken from me when I was young, and now there's a very good chance I'm going to be taken from my girls while they're very young,' Dane continued, adding that, at the end of the day, all he wants to do is spend time with his family and tell them every day that they are loved.
Despite being diagnosed with ALS, Dane has returned to acting, saying, 'In my heart, I don't feel like this is the end for me. I'm fighting as much as I can. There's so much about it that's out of my control.'
But Dane's wife, and the mother of his 15- and 13-year-old daughters, Gayheart has been his 'biggest champion' during this time.
'We have managed to become better friends and better parents,' he said as he got emotional. 'She is probably my biggest champion and my most stalwart supporter, and I lean on her.'

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2 hours ago

• Yahoo

Sask. NDP and ALS society calling on province to investigate Moose Jaw health centre

Saskatchewan's Opposition NDP and the province's ALS society are calling on Minister of Health Jeremy Cockrill to launch an investigation into the Dr. Goodenowe Restorative Health Center in Moose Jaw. Last week, the CBC reported that Dr. Dayan Goodenowe, who runs the centre, tells patients with ALS that his supplements can stop and reverse the progress of the disease. On his YouTube account, he says, "stopping the progression of ALS actually isn't that hard." He backs up his claim by pointing to some patients who say they feel better on his supplements. He also told CBC he's working on studies to verify their effectiveness. Goodenowe charges ALS clients $75,000 US for his three-month live-in treatment program. In CBC's story, some patients who took part said it did nothing to improve their condition. The NDP and the ALS Society say there's no published scientific evidence to back up Goodenowe's claims. They say all of the science indicates ALS is a death sentence. They said businesses should not be allowed to prey on vulnerable people. "We're talking about people with an incurable disease, who are desperate for hope, being misled with promises that are not backed in any scientific evidence. This is false hope being sold for profit," NDP rural and remote health critic Jared Clarke said at a news conference Friday. "We cannot allow unregulated facilities to target vulnerable people with misleading claims without any oversight or accountability. So today we are urging Minister Cockrill to act." Denis Simard, executive director of the ALS Society of Saskatchewan, echoed that call at the news conference, saying "we would invite the ministry to do a special investigation." Simard made a similar request months ago. In a Feb. 12 letter, he asked Cockrill to look into Goodenowe's business and "take appropriate action to prevent the dissemination of false medical information that could exploit those facing ALS." Cockrill refused CBC's request for an interview. In a written statement, he indicated there's nothing the provincial government can do because Goodenowe's centre, "has no ties to the Saskatchewan health care system." In interviews with CBC, Goodenowe regularly emphasized that he is not a medical doctor and his facility does not offer medical treatments or services. He has a Ph.D in Medical Science with an emphasis in psychiatry. "It is a private business, not a provincially regulated health centre or affiliate," Cockrill wrote. "The individual operating it is not a licensed medical doctor, so he does not fall under any established health regulatory body." Clarke said that if Cockrill is accurately describing the situation, that's an even stronger reason for him to do something. "To me that's why an investigation is important, to be able to assess whether there is a gap here [and] whether we need additional legislation," Clarke said. Simard agreed. "OK, we don't have an actual place in the law that allows us to investigate this. Let's create one," he said. "Let's find a way that's going to allow us to protect the most vulnerable in our province." In its research, CBC was directed to section 80 of Saskatchewan's Medical Profession Act, 1981, which seems to indicate that it is against the law in the province for someone who is not a registered medical professional to offer medical services. It says it's an offence in Saskatchewan if someone, for pay or hope of pay, "(i) engages in, professes to engage in or advertises to give advice in any aspect of practice; or (ii) furnishes any medicine or treats any disease or ailment by medicine, drugs or any form of treatment, influence or appliance." If found guilty of this offence, "and liable on summary conviction," the offender would be subject to a fine of up to $5,000. CBC asked the minister if this law might apply in this case. He didn't respond to the question. In his written statement, the minister added that "we are not aware of any Saskatchewan residents living with ALS who have accessed Mr. Goodenowe's services." He didn't explain why he made that point. Simard noted that in CBC's story, the ALS patients were all from the United States. "These are all people that are being harmed by this process and I think we have a right to protect them," Simard said. He said this question is not going to go away for the provincial government, because Goodenowe is planning to expand his operations in Moose Jaw. In April, Goodenowe announced the Moose Jaw Vitality Project, which his website describes as "a $100 million community health initiative providing free access to cutting-edge health services and monitoring technologies for all residents of Moose Jaw, Saskatchewan." The project is planned to involve five facilities, including the restorative health centre, a cafe and a facility that will manufacture Goodenowe's supplements, which he has manufactured in the United States until now. Simard said Moose Jaw city council should be paying attention to this as well. "Let's make sure that this person has no approvals moving forward, so that until this is fully investigated, until we can fully validate what is being done by this individual, nothing should happen at any other level," he said. For his part, Simard said he has warned Saskatchewan's 73 ALS patients that they should have nothing to do with Goodenowe or his facility.

Boston Globe

12 hours ago

• Boston Globe

Introducing ‘Endless Thread'

Follow 'Endless Thread' wherever you get your podcasts. The following is a lightly edited transcript of the June 19 episode of the 'Endless Thread' podcast. Shirley Leung: Hi, this is Shirley Leung, host of the 'Say More' podcast. I want to share something special with you this week. It's an episode of the podcast 'Endless Thread,' from our friends at WBUR. In this episode, you'll hear the story of Brooke Eby. She was 33 years old when she was diagnosed with amyotrophic lateral sclerosis (ALS), a neurodegenerative condition commonly known as Lou Gehrig's disease. As ALS progresses, you lose the ability to walk, chew, and eventually breathe. Patients are usually given two to five years to live, although younger patients often live for longer. Brooke has been documenting the progression of her disease on TikTok, often with laugh-out-loud humor. Ok, here's the show: Ben Brock Johnson: Brooke. Thank you so much for hanging out with us. Amory Sivertson: This is all prerecorded, so you may hear us stumble over things, questions that we wanna ask you, in which case we'll just do them again. Feel free to do the same if you start an answer and you want to say it differently. Johnson: And you're allowed to swear because it's a podcast. Brooke Eby: Noted. Sivertson: If that's your jam. Eby: It's actually like my New Year's resolution to do it less. So I'm trying not to. But like, I feel like that's such a cliche New Year's resolution that never really sticks, you know? Sivertson: No, I don't know anyone who's trying to swear less. I think in these times people are swearing more. Eby: Yeah, it's the inverse, perhaps. I'm Brooke Eby. I'm currently in Florida. I'm here for the winter, so right now it's like 80 degrees, which sorry if you guys are in the Northeast. I'm in Maryland for the summer, so I used to be in Maryland year round, and now that I live with my parents, I get to just mooch off of their snowbird lifestyle. Sivertson: Brooke Eby is 36 years old. Until recently she was living alone with her dog, Dr. Draymond Green, named for the basketball player Johnson: Last fall, Brooke and Dray moved in with Brooke's parents who mostly live in Maryland, but make like geese in the winter and head south. Brooke did not take the decision, to use her word 'mooch off' her parents, lightly. First, she consulted her over 200,000 followers on TikTok. Eby (clip from TikTok video): I need advice, people. Johnson: In this TikTok video from last summer. Brooke is outside. She's talking into her phone, which is positioned below her face. It has that look of an impromptu FaceTime call from a friend. Eby: I just need reassurance. Maybe I just need someone cheering me on that this is the right thing to do. Or like stories and pep talks of moving back in with your parents at the age of 35 is okay. This is a big regression feeling, so I don't know. I need reinforcement. Help me. Johnson: Brooke sent this message out to her nearly 200,000 followers at the time, more than 1,700 people commented. Sivertson: There was nary a negative response in the bunch. They were all like, 'It's a reconfiguration, not regression, and save money.' Johnson: Brooke has a lot of followers, thanks in no small part to her humor, which can be pretty edgy. Here's her doing a standup set for a crowd. She's joking about people who have Lou Gehrig's disease, also known as ALS. Eby (clip from comedy show): I wanna be clear, Stephen Hawking is an absolute legend, but did he make ALS cool? Johnson: Brooke's standup was a sit down affair because Brooke's in a wheelchair. For the past three years, Brooke has been living with a terminal diagnosis. And through almost all of it, she's been posting on TikTok. Eby (clip from TikTok video): What if I could walk and move again and I just became like an insufferable dance TikToker? My top is Old Navy. My pants are Amazon. My headband is Lily and my Life Alert Necklace is Sky Angels I've been on the exposing-people-faking-diseases-for-attention side of TikTok lately. I gotta say I'm a little offended that no one has accused me yet. Johnson: I'm Ben Brock Johnson. Sivertson: I'm Amory Siverston and you're listening to 'Endless Thread.' Coming to you from WBUR, Boston's NPR. Johnson: And today we talked to Brooke about making jokes through hard times. Brooke was not a naturally inclined social media star. What was your relationship with social media during your twenties? Eby: At the beginning of my twenties, Instagram was much more like, do you remember those extra-filtered pictures that we were all putting up? With the borders? That's what Instagram was. No one had stories. It wasn't very oversharing. And then I think it got more and more advanced later in my twenties, but I was normal on it. I was private just to my family and friends Johnson: After graduating from Lehigh University, Brooke worked in tech. She spent most of a decade bopping between coasts. Eby: And then when I turned 29, I was moving back to New York from San Francisco. And when I was in San Francisco, I started feeling tightness in my calf. But I thought it was like– when you're 29, you're so oblivious and naive– 'Oh, I just did too much Pilates. I'm that in-shape that my calf hurts.' Johnson: That symptom became harder to ignore on the streets of Manhattan. Eby: Pretty quickly you're walking slower in New York City because people are just bulldozing you. And I'm like, 'This feels funny.' But again, I just didn't pay attention to it. I ignored it really until some of my colleagues started pointing out that I was limping. Johnson: At first, Brooke talked to her sister, who's a doctor, to see if she had any idea of what was going on. Her sister thought maybe Brooke had a pinched nerve. Doctors outside of the family were just as flummoxed. Eby: We were all sort of delusional that I was perfectly healthy at 29, but that kind of kicked off like the whirlwind of the four year diagnosis process. Johnson: In 2022, Brooke started losing her balance more often, so she went back to the doctor. The weakness that had started in her left leg had moved to her, right. That was enough to confirm a diagnosis: ALS, neurodegenerative disease, commonly known as Lou Gehrig's disease After the Yankee's first baseman who was diagnosed with ALS at the peak of his sports career in 1939. (Lou Gehrig baseball clip): A fatal disease attacked baseball's iron man. 'I might have been given a bad break, but I've got an awful lot to live for.' Johnson: As ALS progresses, you lose the ability to make most voluntary movements like walking, chewing, swallowing, food, and eventually breathing. Patients are usually given a life expectancy of two to five years, although younger patients often live for longer. Sivertson: What was your knowledge of ALS before this, or what was your exposure to it? What did you know about it? Eby: I clearly knew nothing about it because I thought in my mind it was a genetic, mostly genetic, disease that affected older men and was super rare. Like those were the three things that I was pretty sure of going into it. And then I also was told it moved so fast that you know, in a matter of months you're like paralyzed, if not dead. And I'm like, 'Well, I've been dealing with this for four years, so I just don't get it.' I'm like a young woman with no genetic markers, like they even tested my genes and they came back clear. So I just was so wrong about everything. It turns out like 90 percent of cases are not genetic, so it didn't rule anything out there. It's not nearly as rare as I thought it was, and it affects anyone at any age, like it truly does not discriminate. So everything I thought I knew about it, was wrong. I remember the ice bucket challenge, but mostly because I didn't get nominated and I felt really unpopular. Sivertson: Remember the ice bucket challenge of 2014, Ben? Johnson: I remember the viral dump-a-bucket-of-ice-water-on-yourself-after-someone-nominates-you part, but I completely forgot that this was about raising money to cure ALS maybe because nobody tagged me. Sivertson: Well, nobody tagged Brooke either. Eby: I'm like, 'Man, I'm in no one's top three.' Gimme a break. Johnson: The initial few months after the diagnosis were rough. Eby: All I had been doing was like lying in bed and eating M&M's every day. It was a dark time, reading a lot of books. I think I was reading like a book a day to escape. I know my Goodreads was fire that year. It will never be that high again. Johnson: In between tearing through books, Brooke had to tell everyone she knew that she was dying, which made people uncomfortable Eby: Because no one knows what to say. Like I remember we were at the doctor, at the neurologist, and they were like, 'Well, with ALS you really need to focus on gaining weight. So like, eat whatever you want, eat as much as you want.' And my sister goes, 'You're so lucky.' I just remember immediately pulling out my phone and being like, 'We're gonna remember that one.' My poor sister, I use it all the time. She's the kindest one of our family, and I'm always throwing her under the bus with that story. Sivertson: Brooke started keeping a little note on her phone with some of the funny moments related to her diagnosis. Johnson: But she wasn't sure anyone else would see the humor in a situation that was also pretty bleak. So she kept the note private until a wedding where she was supposed to be a bridesmaid. Eby: I was like, 'You've got to be kidding me.' The bridesmaid dress barely fit me, because, again, the M&M's. Then I showed up with a walker. And as soon as I walked in, the bride's grandma showed up with the exact same walker. I looked down and I was like, 'Oh, she has tennis balls, too.' So we were kind of like, 'Heyyyy.' I turned to my friend and I was like, 'We're out of here. There's no way I'm going to walk down the aisle with this walker as a bridesmaid, no chance.' My friend, not the bride, I told her that in secret and she was like, 'It could be really embarrassing or we could just try to make it really fun, like you're gonna get a good story out of it. Just go for it.' We made it through the ceremony and then by the reception, I don't know if my embarrassment had worn off or if I just kind of forgot about it, but we had the best time on the dance floor. The bride was doing the limbo under my walker. People were hopping on for walker rides and I was like, 'Okay, everyone's laughing.' I'm way more comfortable because the prior two months I had just been having like tearful conversations telling people about my diagnosis and being like, 'All right, go. I ruined your day. Like, go enjoy.' And so this was the first time I'm like, 'All right, people aren't even asking me what's going on. They're just trying to have fun.' Johnson: When Brooke got home, she started going through the note on her phone, detailing all the funny moments since her diagnosis. The next day she had brunch with the same friend who cheered her up at the wedding, Jackie. Brooke showed Jackie the note on her phone. Eby: She was like, 'Brooke, you need to do something with this. This can't just live here.' I forced her to be in my first video because I'm like, 'If we are gonna be embarrassed, you're going down with me.' Johnson: The very first video is of Brooke and Jackie on a couch, pantomiming the conversation where Brooke discloses that she has a rare terminal illness. Brooke's head is in her hands. She's pretending to cry, but Jackie is smiling wide with deep dimples. The videos that follow are very vintage 2022 TikToks. Heavy on popular sounds like this one with the footage from the wedding that started it all. (TikTok clip from Eby's account): Don't be suspicious. Don't be suspicious. Don't be suspicious. Don't be suspicious. Johnson: That's played after a caption of Brooke saying she 'doesn't want to draw attention to her diagnosis,' while you see Brooke and her walker absolutely being the main characters on the dance floor. Sivertson: Brooke's terminal illness and her willingness to laugh about it were immediately the cornerstone of her shtick. She uploaded the videos under the handle @limpbroozkit. Johnson: Fred Durst, anyone? Limp Bizkit? No. Amory? No? Sivertson: I get it. Brooke had no idea if anyone would find her videos funny. Maybe they would just find them sad. Eby: That's why in my first couple of videos, I was always kind of nervous because I'm like, 'Should I be joking at a time like this? I don't know.' Johnson: That all makes total sense to me. And I also think humor has always been this way of dealing with darkness. Right? Eby: I agree. I think especially with COVID. During and post COVID life, the whole concept of meme culture, like we can make a joke out of absolutely anything. Like we're quick now. People just need humor, I think to process things. Johnson: Can you talk a little bit about when you started to realize that you were really gaining traction with the stuff that you were putting on the internet? Eby: When I first started seeing my follower count go up and all of that. It was probably my dating videos, early days when I was using a cane. Johnson: These videos feature screenshots of the texts she got from potential suitors. Sivertson: Things like, 'Can I borrow your cane? I feel myself falling.' Johnson: Or 'Okay, I see you Abraham Limping.' Sivertson: Next, Brooke started making videos about this medicine she was taking as part of a trial Johnson: Medicine that tasted really bad. Eby: So I did a taste testing series so people could suggest how to chase it or how to deal with it. Eby (clip from TikTok video): Pickle juice, shot glass. Oh, stench. Let's just do it. Let's just do it. It's no big deal. Eby: I think after those two, that was when I started seeing, 'Okay, people are remembering that they've seen me before and they were saying like, Brooke, blah, blah blah.' They remembered who I was, as opposed to it just being another swipe away video. But it is hard, I think, to still understand any sort of impact you make if it's just on the internet, because, I don't know, sometimes it feels like I'm playing The Sims. I see the number of people watching and I see all the comments, but it's strange because ultimately I'm talking to my phone and then I'm clicking a button and then I'm seeing little internet sims pop up as comments. I'm like, 'How is any of this real?' It's strange because everyone's like, 'You're so brave.' I'm actually just talking to myself in my room. Sivertson: Do you identify as an influencer? Do you think of yourself as an influencer? What's your relationship to that term? Eby: No. I don't really have one. The stuff that I influence on is much more niche. If you need adaptive clothing, I've got a recommendation, but it's not like everyone's going to go out and sell that out because it's not a need for most people. Johnson: That's what I was gonna ask, what are the products that you would influence on? Eby: Yeah, you should see the partnerships that reach out to me. I always crack up picturing my manager versus a normal person's manager, because she gets calls from the National Funeral Directors Association and I'm like, 'Sure, sure, sure. That's a perfect fit.' It's a very weird space to be in. Sivertson: So Brooke is definitely not a full-time influencer. She still works a nine to five job in tech with only the occasional funeral sponsored content. Eby (clip from TikTok video): Funeral directors help with every step of the end of life plan. They can document your wishes and understand the logistics. So if I wanna play Kesha's 'Die Young,' noted. Johnson: Unlike other viral creators, Brooke doesn't get a lot of hate online, but she does get comments that are pretty weird. Eby: Someone wrote me a message. This poor person because I don't even know who it was. It was some stranger, but she was like, 'Sometimes I feel like I have a death sentence because I've been single for so long.' Sivertson: Oh. Johnson: Wow. Eby: It's just like, in her heart, she's not trying to be mean to me. Johnson: Mm-hmm, right. There's also this layer of pity or sort of people being like, 'Oh, you make me feel thankful for every day because your life is so terrible, right?' Eby: Yeah. Johnson: What does that feel like for you to receive? Because you seem very open and non-judgmental in some ways, but also you can see the humor and ridiculousness of the way people act towards you. That's what I was trying to ask about, if that makes sense. Eby: Yeah, I actually had not even thought about that. Then someone messaged me once and they're like, 'Do you ever get sick of being the reason people want to be a better person?' And I'd never really thought about it, but once she said it, now I'm like, I do. It kind of is in the back of my head sometimes when I get comments like that, but they have to be phrased in a very specific way for it to be a little obnoxious. Most of the time, if someone's like, 'I wanna appreciate every day.' To me, that's a great comment. I'm like, good. If someone were to say, 'I should feel lucky because my life isn't as shitty as yours,' I don't think I would like that phrasing. But I don't know that people phrase it like that. I don't remember seeing that. At least I would say feedback is a gift. The feedback that I got, especially at the beginning was, 'You're making light of this' or 'You seem too happy.' And I think honestly, most of the people who are making those comments are probably ones who had a first row seat to someone living with this and are still feeling angry at the disease. At least that's the backstory I've given them because otherwise, what do they care? I think in my mind, I'm not reframing it. I just wasn't that progressed. It wasn't that hard at that point. And now that it's gotten worse, there's not going to be as many videos of me being like, 'Hey, this is no big deal.' It's just the nature of progression. So I'm just like 'Stay along for the ride and if you wanna see things get worse, you will with this disease. So stick around.' Johnson: Watching all of Brooke's videos in one day is kind of like reading a flip book of how ALS progresses. In the early videos, Brooke doesn't look that far off from, say, one of the famous beauty influencers like Alix Earle. She does her makeup and get-ready-with-me videos. Her shampoo-commercial hair always looks like she's just had a blowout. She lives alone in a cool apartment. Now she needs around the clock care, thus the difficult decision to move home. Sivertson: How would you describe your mobility right now? Eby: Like a ragdoll? Nothing really works. I can raise my hands, but they're claws now. I'm really not into the way they look. I can still type, especially on my phone. I can still type on the keyboard, a lot more typos these days. I can move my head and talk, but below the screen, it's a mess. Johnson: Before the TikTok band briefly went into effect in January, Brooke made a video about how it felt to go back and watch her own content from the beginning. Eby (clip from TikTok video): It's so surreal the amount that we've had to adapt. Three years ago, I was walking and now I can't do anything. I don't even feel emotions because it doesn't feel real. It feels like I'm playing a role in a movie and then someone's gonna finally yell, 'cut,' and I'm gonna just pop up outta my chair and go be normal again.' Eby: Day to day, I think it's easy for me to just rely on humor and staying busy to cope. But then in that video, I just looked back at all these videos from a year before, two years before, five years before. And I was like, 'Oh my God.' I did not realize, I knew how much it changed, but I don't know, seeing myself just a year ago versus today was startling. I don't think our brains are meant to compute the speed of change that comes with this disease. I made that video and I was thinking, 'This is not a relatable feeling at all.' I just feel like I'm an actress playing a role right now. This doesn't feel real. And people are like, 'No, that's called dissociation. That's very much a psychological term that most people go through.' And I was like, oh, okay. You can tell I'm not actively in therapy all the time. Sivertson: In your videos, you've been documenting all along the way, the progression of the disease and how it's changing your life day by day, implement by implementation that you're adding into your routine. But there will come a time when you can't verbalize anymore, when you can't use your voice and use your humor in the way that you use it now. Do you think you'll still be making videos? Have you thought about what the content creation process might be then? Eby: Yeah, there are some people who go the full progression while still having a voice, and I'm still delusional enough to think I'm gonna be one of them. Even though my voice is clearly getting weaker, I'm still not slurring, which makes me happy because I'm like, people can still understand me. But that said, I have voice banked. I do have my voice saved so I can use it in some sort of text-to-talk thing. That's a big thing in the ALS community. As soon as you get diagnosed, they start saving your voice. But, I think my intention is to keep going really as far as I can. I think the way it looks might be a little different. Rather than me talking a ton, it might be like my parents helping to talk or filming stuff. Or maybe it's just, not talking and I'm just putting music over something I'm doing. I think there's options. My goal is really to show everything, just because that's what I wish someone had done. I would love to see someone who's more progressed than I am, get into bed or stay asleep. Like how the hell do you stay asleep when you can't move and you get uncomfortable or something falls asleep? Those are the things that I don't want to watch a whole sad documentary just to glean insights of how to do things when I could just make a two minute video. It might not work next week, but it's working right now, so that's the goal. Man plans, God laughs. I think people say, but that's the plan for now. Sivertson: Brooke doesn't know exactly how much time she has. Maybe she has five years, maybe she has 10 years. Johnson: What she does know is that curing ALS, it's going to take more resources. Sivertson: Social media, whether it's the Ice Bucket Challenge or a TikTok or raising awareness, can build community around ALS, but it's not going to cure the disease. That takes research, which has a price tag. Eby (clip from TikTok video): Thank you for all of the thoughts and prayers. Now, have you considered money? Sivertson: Right now ALS researchers are facing proposed funding cuts by the Trump administration that could drastically slow down their efforts. So if you're a billionaire, says Brooke, maybe forget about rockets and Mars and take up funding ALS research as your cause. Eby: I feel like the other planets have already made it here, and we just haven't been told about it. So I'm like, why don't we just ask them what it's like before we go waste all our money going there. Johnson: On TikTok, Brooke is a one woman ice bucket challenge, raising awareness of ALS and what it's like to live with it. But going viral prompted her to start another online community, one that's more specific. Eby: So if you think about my last two and a half years after being diagnosed, I put myself in front of an audience, and because of that, I have access to so many more resources because I have 200,000 people willing to answer a question I have. If I were to post, 'I really need advice on the best toothbrush for weekends.' I could get a thousand messages back. Whereas someone who's not a psycho putting her life online, like a normal person living with this disease, they could go to their support group, and I don't know how fast they'll get a response. There's just not as immediate of answers as I've been able to get. So I kept thinking about that: How do I make it so everyone has this level of access and this level of immediacy? And then I flashed back to when I first got diagnosed, they give you this godforsaken packet, it's like an encyclopedia size, and it's just pamphlet after pamphlet of resources. You've just gotten diagnosed, they tell you you have two to five years, it could be less than that and you're gonna lose every ability until that point. You go home and your brain is just scrambled and you're also like, am I gonna be paralyzed tomorrow? Like you just start thinking in terms of speed, everything moves so fast, and yet the resources they give you are in a folder with paper that none of us has used since elementary school. I'm like, if this disease moves fast, like why are we still treating it like we're in the nineties? We gotta do better than this. Johnson: Brooke's day job is at the tech company, Salesforce. She worked with some of her colleagues there to create a channel on the professional group messaging app Slack. It is specifically for ALS patients and their caregivers, and it's called Brooke says it's really special to her because it's a rare space where people are going through similar challenges. Eby: Even when I'm talking to my best friends in the world, who I've known since we were four years old, I could tell her anything, but right now, she's about to have her second baby at the same time where I'm learning how to use a ceiling lift to get me into the shower. Like we lead two very different lives. I think it's probably the same way that moms feel after they have a baby, where they're like, 'I could complain to my friends, but unless they have a newborn too, they don't get it.' That's probably how everyone feels about something in their life. It's just good to see other people, whether they live near you or look like you going through the same thing. Because you're like, 'Okay, I'm normal in this group.' Johnson: If you have an untold history, an unsolved mystery, or other wild story from the internet that you want us to tell, hit us up at endlessthread@ Leung: Thanks for listening to this episode of 'Endless Thread.' If you want to hear more, follow 'Endless Thread' on Apple Podcasts, Spotify, or wherever you listen. And make sure you're following 'Say More' while you're at it. Kara Mihm of the Globe staff contributed to this report. Shirley Leung is a Business columnist. She can be reached at

Forbes

13 hours ago

• Forbes

Why Smoking Is Making A Comeback — And What It Means For Your Health

Gen Z is picking up where past generations left off—with a cigarette in hand. A cigarette lit on screen once symbolized noir, danger and cool detachment — think Bogart or David Lynch. Then came the lawsuits, anti-smoking campaigns, bans and the rise of vaping. For a while, it seemed America had finally kicked the habit. But now, a smoking comeback is underway. Zendaya lights up in 'Euphoria'; Jacob Elordi does the same in 'Saltburn.' Celebrities like Dua Lipa, Charli XCX, Timothée Chalamet and Anya Taylor-Joy have been spotted puffing away, becoming modern-day "cigfluencers." In 2020, cigarette sales rose for the first time in decades — though still far below the 1981 peak of 636.5 billion. Even among teens, nicotine use is shifting from vapes back to traditional cigarettes. A recent report by Truth Initiative found that tobacco depictions in top films have increased for the first time since tracking began in 2002. So what can we do? From Trend to Relapse We've been here before. In the early 20th century, cigarette smoking was glamorized in Hollywood, normalized by doctors and deeply embedded in American life. By the 1960s, nearly half of U.S. adults smoked. Then came the fallout: emphysema, heart disease, stroke, lung cancer. The medical evidence caught up with the image. Public health campaigns, warning labels, advertising bans and billions in legal settlements helped turn the tide. Not to mention, the astronomical price for a pack of cigarettes and the fact that there's no longer any places to smoke in public. The 2020 Surgeon General's report marked a historic milestone: adult cigarette smoking in the U.S. had fallen to just 14% — the lowest rate ever recorded. It was one of the greatest public health wins of the modern era. But smoking never truly disappeared. It shape-shifted. First into cigars and hookahs, then into sleek USB-like vape devices. Vaping was marketed as a safer alternative — a harm-reduction strategy. But the reality is more complicated. Juul didn't kill the cigarette. It trained a new generation to inhale nicotine. Now, we're seeing a strange reversal: from vape to smoke. From digital detox to vintage, Instagrammable vice. And once again, public health is playing catch-up to pop culture. A Healthcare Advisor's Take: Why This Matters Now In my work advising families, executives and individuals navigating complex health decisions, I've learned one truth: the greatest threats aren't the ones making headlines. They're the silent resurgences — the risks we assumed were relegated to history. Like measles. For over 20 years, we nearly eradicated it. Vaccines turned a once-common childhood illness into a relic. But now, declining vaccination rates and global travel have breathed life back into this preventable disease. Outbreaks are flaring in communities we thought were protected. Same goes for whooping cough. The resurgence of smoking may look like an edgy accessory for Gen Z. But it has real consequences, especially for anyone with a family history of heart or lung disease. What makes this moment so dangerous is the normalization. When something taboo gets rebranded as a choice — even a form of rebellion — it catches many with their guard down. People start saying things like: 'I'm just a social smoker.' 'At least it's not vaping.' 'I don't inhale.' These are the same rationalizations we heard in the 1980s. We already know where they lead. Why the Anti-Smoking Playbook of the '90s Worked — and Why It's Not Enough Now Remember those visceral commercials from the Truth Initiative? Or the public testimonies from people with tracheostomies begging kids not to smoke? Those campaigns worked because they made the consequences impossible to ignore. They also had something else: funding, legislation and social momentum. Today, the cultural winds are different. Social media algorithms reward aesthetics, not public health. TikTok doesn't run public service announcements. And with vaping muddying the waters, many young people don't even understand what they're inhaling — or how much. ​​Legislating Against the Cigarette Comeback Even as smoking regains cultural cachet, some states are pushing back with unprecedented measures. Nevada could soon make history by becoming the first U.S. state to outlaw cigarette sales to entire generations. A proposed law (AB 279) would permanently ban sales to anyone born after 2004 — a rising age restriction designed to phase out cigarettes entirely. What's Actually in a Cigarette For all the romanticization, cigarettes remain one of the deadliest consumer products ever marketed. A single cigarette contains more than 7,000 chemicals — 69 of which are known to cause cancer. Smoking contributes to 1 in 5 deaths in the U.S. each year. And it doesn't just affect the lungs. The one question I'll guarantee your doctor will ask for your next annual checkup is this: do you smoke? Smoking increases your risk of: It also accelerates aging, damages skin elasticity and reduces stamina — none of which pairs particularly well with the image of glamour it's trying to recapture. So Why Is Gen Z Smoking? There's no one answer. But here are a few forces at play: So What Can You Do? If you're a parent, provider or simply trying to keep yourself on a healthier path, here's what I advise: In healthcare, it's easy to focus only on diagnoses and prescriptions. But as advisors, we have to stay attuned to the cultural cues — the smoke signals — that precede behavior. When the smoking comeback starts trending again, it's not just an aesthetic choice. It's a public health flare. And if we don't speak up early, we may find ourselves fighting an old war with new casualties. So the next time someone says, 'It's just one,' don't ignore it. Intervene with empathy, context, and truth. Because this time, we know better.