35 Burst results for "ALS"
Young caregivers 'exist in the shadows,' offer crucial help
"Millions of children in the U.S. are said to be providing some form of home care to a loved one according to a researcher with a program to help 11 and 9 year old brothers ronin and Keaton cotija helped take care of their dad who's in a wheelchair with ALS How put him in bed and get him out of bed put him in the bathroom Their mom says paid help doesn't cover 24 hour care and she can't do it without the boys It's not easy but it's not the best thing like if there's one wish it would be that a dad didn't have ALS so we could do a lot more fun things with him Doctor Melinda kavanagh's why care program gives kids not only caregivers skills but coping ones as well There's no way there's less than 10 million children in this country providing care if not more And they exist in the shadows because we don't look at a child and say oh maybe they're providing care I'm Julie Walker
"als" Discussed on Another Mother Runner
"Girls do. 5 years. Which is like, oh man, at 25%. People were there last week. I realized that I wasn't really living if I was living in fear of one of my heavens, so I needed to. Crazy girl. I reached on us, it didn't matter. Purpose having something to do. Wow. Well, you're doing it. You're doing it. And you have enough to do. You're starting a new project. You have this 50 things in 50 days. Can you talk a little bit more about that? Yeah, so she will start on April 8th. Let me know if I'm wrong here. Right? So she is has a goal to inspire people to do something. It can be anything. For 50 days, leading up to that race. And I've seen a lot of different ideas like do 50 push ups or Barker 15 miles or a trial. Yeah. I love that. Yeah. So as someone about your college roommate is a picky eater. She's challenging yourself to eat 50 new foods. My daughter do that. Yeah, and anyone can participate in this. You know? I've talked to my kids a little bit about it. I'm like, my sister is talking to her kids about it. So, you know, I mean, really, we could all, there has to be something, probably more than one thing, that all of us kind of like, I don't know if I could do that or we sort of avoid and we're kind of comfortable avoiding it, but maybe if we just get ourselves outside our comfort zone a little bit and it's very personal to you and that's the point. You know? And then there's also a fundraising component to it. So if you donate $50, that will go toward Andrea's fundraising. And send you a medal. And yeah, all the money we raised and we're in it for a thousand. Research. Well, I'm speaking for Sarah and I, we're both in. So right there. Yeah, we got to think about when it's good. I have to think about what mine is going to be. Jess, what are you going to do? You have a plan, right? Yeah, I have a plan. I'm going to do so I love to draw and paint, but I also have a lot of, it's just hard, I get in my own way a lot. So I decided I'm going to do I'm going to make a drawing or painting of a swallow every day for 50 days. And the reason for the swallow is because of the symbol that it is in the ALS community. Which, so I don't know if I'm going to get this whole thing right. But there was a person who had ALS, what was his name? Do you know? Okay, so I don't know if I got all that. Tim. Fillet? A lot. Well, we're going to have to look that one up because Tim, Tim, we got ten. So he had ALS and his mom had ALS. I remember. And she had left him a book. And I am just going to say, I might have some of this wrong, 'cause I haven't refreshed my memory on it, but what I do remember is that she gave him a book and inside she had drawn these swallows inside the book. And he gave himself a tattoo or got a tattoo. I don't think he did it to himself. Of the swallow for, and I think he had a lot of them, actually. A prince also his driving. First of all. Tattoos. And he was a patient of doctor bed locks, right? So Andrea's doctor at duke, who you have to swallow tattoos, right? Right. So it became, yeah, she'll show you. I have. 7. 7, 8 is coming soon. Did you find someone to do it? You got someone there to do it. Working on it. Okay, so she wants her 8th anniversary of her diagnosis will be in May. And so in the Alaska marathon is in May. And so she wants to get someone in Alaska to do the tattoo left. She's there. Yeah, so the tradition has become that you get when you have ALS, you get a swallow tattoo on the anniversary of your celebrating your life since your diagnosis. I mean, that's mine. That's how you're doing that. Neuron that just has a swallow on his head, so when he says to him, people will tell us here our members tell them something hopeful. Yeah. I love that. And I didn't know that until today, actually, I was just reading up and I thought, because it seems like a lot of different causes have different symbols like ladybugs and butterflies and I haven't heard of the swallow, so. I've been on the lookout for that. That's what I'm going to draw. I'm going to make follows as follow art every day. It'll be tricky because during that time I'm traveling too. And so I have to do it well. I'm at Boston actually, and then I'm visiting my mother too. So I'll just bring my supplies with me and honestly. Yeah. Yep. So it's said that ALS is not incurable disease, just underfunded. So Andrea, through your foundation, team drag. It's Dre, right? You've raised over 750,000 from two organizations. ALS TDI and duke university. And they focus on progressive research to find a cure and not just relieve the symptoms. So what can you just describe what your reasoning was behind that? They are, I think, outside the box and that is Barbie. In this disease, I just believe that they have a patient best interest.
"als" Discussed on Another Mother Runner
"Was completing 50 marathons in 50 states, I had no idea how special that trip was or how amazing her friend is. Andrea Pete is her friend and herself written bio and her website reads like this. By 2013, I had run a marathon and done 9 triathlons, including a 70.3 mile half Iron Man. In 8 months, I went from the strongest I'd ever been to walking with the cane, and I was diagnosed with ALS in May 2014 at the age of 33. So what do you do when you're told that you're going to die in the next two to 5 years? I realize that if there's something I really wanted to do, I needed to do it now. We bought a recumbent trike and I signed up for my last triathlon, which became the most extraordinary day of my life. Last is in quotation marks there because now her crazy goal is to do a marathon in all 50 states. It is a lifetime goal for many runners. In my lifetime just may be a little shorter than theirs. But who's to say? So Las Vegas was marathon number 47 for Andrea, and she's since completed number 48 in California, and she has just two states left New York and Alaska, which will wrap up in the next two months. Wow. We are thrilled to have both Andrea and coach Jess on the podcast today to talk through Andrea's story, adventures, and how she wants you to challenge yourself. Wow, so welcome, ladies, and first things first, how did you two meet? Thank you so much for having us. We are so happy to be here. Let's see, Andrea and I met back in, I think it was 20 17, 2017. I was teaching Pilates locally at a studio near me and her mother actually came in to inquire about lessons for herself and her daughter. And I, of course, I was excited to talk to her and she told me about Andrea and Andrea's diagnosis and how she was a triathlete and I knew exactly who she was because I had very recently read an article about her that my sister had sent to me, my sister, Jodie, who lives up in the D.C. area, her father had passed away from ALS, maybe a year and a half before that. And Jody had heard about this amazing young woman who lived near me. And sent me an article that she found. And so I just, I couldn't believe I was standing there talking to her mom and immediately. I was actually on the verge of, I'd already put in my notice at that studio. And I was like, well, maybe I don't need to leave. So I literally stayed because I wanted to work with Andrea and her mom. And so that's how it started. They came in for duets, mother daughter, private one on one sessions with me. Wow. And we just immediately instantly had a connection. And so that's how that's how it started. That's great. That's so cool. And you saved her job, Andrea, so that way. You didn't know that. No pressure. No, totally. That was how it worked. So Andrea, when you were given the diagnosis of ALS, this is kind of a dumb question, but I'm curious. What went through your mind? You were a strong runner and triathlete, and I can only imagine what it would feel like to be told you were going to lose the ability to move, let alone, you know, give the diagnosis of two to 5 years to live. I mean, yeah, I mean, how to remind us of that day. It was as you can imagine, it was a shocking end. That's scary, but my talented hospital. I realized that I was walking and I was talking and we went to each and that made me all day. I think it's so I realized I needed to realize that last time that I had come to just live my life and I think. The next day they wake up with knowledge and I do go on living this the hardest part I that was my life I decided, you know, I want to. I can do yeah, wow. Wow, and I'm just gonna give us all, including Sarah and I permission to tear up during this podcast because Andrea, you were. I told Demi before we started recording. I was like, I'm gonna have a hard time holding it together. You're just so inspirational and, you know, I'm just an emotional wreck anyway. At any given day, but yeah. Here's her flowing right now. So, okay. So Jess, one of the things that you mentioned was how astounded you were by how much work it is to get up every day and do basic tasks for Andrea. That we is able bodied people take for granted. So Andrea, we know that swimming is part of your workout regimen. Can you talk us through getting ready for a workout? And Jess, you can supplement. I mean Nicole. I'll call you when I already had a glimpse of this, just when Andrea would come to the studio for our Pilates Sessions. The studio was on the, it was at a big lifetime fitness, like on the second floor, you know, Andrea. And actually we've met each other at the trail for a run, and then of course when I traveled with her to Nevada, that was obviously very eye opening too into the just every day. And she actually wrote a great blog post about this. I remember it from a while back where she likened the start of her day to American ninja warrior. Perfect. It's like getting out of bed, getting to the bathroom, doing things like brushing your teeth, going to the bathroom, showering, you know, all of these things. And I know when we were in Nevada, she had like some tricks where she was like, okay, so the night before she'll wear her outfit that she's going to do the race in, to sleep, because then in the morning, it's like not going to take as much time. I mean, she's a pro. She's definitely, I've imagined like this is all come through experience of how to master the things to make it a little bit less taxing. But you know, you have to think about everything. Because anything could maybe be something that could help you be assist you in navigating, like going from the car to the front door or the front door to the pool or getting in her trike and whatnot, but also there could be hazards in your way that you might not necessarily like for us. We might not think about like, oh, I should make sure that gets moved out of the way. So I don't trip on it or steps and all those kinds of things. And I mean, I haven't been with you on a swim that I would imagine it's very similar. Being prepared, making sure you have everything ready. And yeah, I don't know. I approach it that I am can I drive and I use it. Yeah, around. So the thing is that I have like one spin..
FDA skeptical of benefits from experimental ALS drug
"The food and drug administration has issued a negative review of a closely watched experimental drug for the illness known as Lou Gehrig's disease the FDA review comes ahead of a meeting this week for outside experts to vote on the drug for ALS the medication has been the focal point of a lobbying campaign by patients their families and lawmakers FDA reviewers have said that the single study from analytics pharmaceuticals was quote not persuasive due to missing data errors in enrolling patients and other problems they also said that regulators were not convinced by data that the company said show the drug helped patients live six months longer I'm surely ocular
"als" Discussed on The Voicebot Podcast
"Okay, so you're able to get over 300,000 people to clone the voice over a couple year period, I think. What did you did you think it would get that big? No. We did not expect that we will get let's say so many people to create their voices. We thought that it can happen eventually that we will get. But I don't think that we would expect it. And I am a bit foggy on the details here. But just going back, it feels like we were not sure that we are going to get so many users. And we were not sure that we will get our overestimating how many apps will come to create the apps. It does kind of underestimating the number of people who will create voices and overestimating the number of apps that will get created on this platform. Right. Right. So it must have been a shock at how much storage space and processing that you were eating up. Yes. It was not that compute intensive, to be honest, a story is, of course, and about the stories is really cheap. We were able to create every voice in just two minutes. So it was not taking more compute than just two minutes, which was fine. And when you start up, you get a lot of cloud query, so it's served as quite well. That's great. All right, so this idea of the apps really didn't materialize, did it? I mean, how many apps do you recall actually trying to use the API? Yeah, it really was around. I think 20 apps in total. Did anyone go into production? They were some like, for example, the app about for ALS people that allow them to. When they are when the ALA space centers are in the process of losing their voice, they could they could dump their data via some third party platform or going to layer bird and just read the sentences. And then once their voice is created, then they can get access to the API to be presented to them insert and there are some third party we had integrated our API with a special interface for them, which they can use to create their voice. Our generate text from their voice. Got it. So that was one that went to production and that was a significant number of users, wasn't it? Not very significant. I would say, does definitely less than hundred, if I recall correctly. Oh, okay. I thought it was higher than that. Yeah. And it was still, let's say, kind of proof of concept that it can work. Some people were using it. So got it. So you're going through this process, you obviously have some interesting technology. There's a lot of people who are trying it out from a novelty standpoint at the very least. Maybe someone to do it more. What were some of the more interesting applications that people talk to you about potentially using for the voice clones? Like many. And I think some of them are still happening and people are using over that. And so some of the, let's say, the good use case is that people who are always asking for are like, oh, can we do a personalized message to all the, let's say, if you are a celebrity, you can send personalized message to all your fans. Oh, I want to send a personal greeting in myself, speech to every customer that I have. So very well, I would say that each of personal ideas are needed at a scale which you are not willing to do by just sitting in front of a computer or in a recording studio. People were finding that this technology can really help them do that quite well. ALS was one of the good use cases. I think people even tried it for audio video editing again. Just the crease, the content creation space, people started like, oh, maybe we can just create whole audiobooks with that. We can create the podcast or I want to just fix some stuff. We can probably just use my liver device for that..
"als" Discussed on Sounds of Science
"It. Okay. So what I have to say is a little bit silly maybe but related to what Guinness said. Actually for me, I lost a ton of weight. And I do not realize I think as a young woman. That is always told us that girl you're losing like that's kind of good. So even if I had doctors in front of me saying, you know, don't lose weight, add sour cream to everything you eat. Cake, if you need to. It's so contradictory to what you always been told. That it was hard for me to think that the fact that my legs were scared. That's a bad thing. And so too, from early on with ALS two, really try to keep your weight up. It's going to stay as positive as you can. You can find a strong support network. For other people that are going through the similar thing, I think that's so important. And that's something that really can help your disease too. Progress more slowly and improve your quality of life. Yes, thank you, Leah. How about you, Gwen? Yes. So as women, I think we know our bodies pretty Tam well. So listen to your body. And whether it's in ALS or another disease or Ethan and life itself, sometimes you have to know the right questions to ask in order to get answers, so with that, you know, keep asking questions, keep pushing, you know, research like fine people in your network who can help you just maintain you know your body listens to it. That's great advice for literally everything. Yeah, I think. Yeah. And how about you? I want to reiterate both of your comments are so important. The image of femininity and being a skinny, beautiful woman, and for me that also incorporated being a strong woman was what I thought would make me a valuable human, so confronting all of the body image. It has been extremely challenging as a woman, but what I would want people to know, I would not wish this diagnosis on anyone, but when faced with anything that is this devastating surround yourself with the strongest people you can find. And the women of her ALS story absolutely. Represent that for me and I couldn't imagine trying to get through this fight without some. Yeah, and I know that you all know this better than most people, but just to reiterate for the listeners at home. There's all different kinds of strengths. And having to separate that out into, okay, I may not have physical strength, I can have emotional and mental and just kind of still be the strong person I want to. Just looks a little different. Oh yeah, you're probably so much fun. Oh my God. 18 and I don't know. Let things happen. Yes. I think we all look good. I hope so. Anyway, dang. Yeah. Well, thank you all three of you for joining me. And for the listeners, check out project ALS, but you can also find out more about these women and others at her ALS story dot org. That's HER, ALS, STO RY dot org. So thank you guys. Thank you, Kate, Leah. Thank you so much for having me. Thank you..
"als" Discussed on Sounds of Science
"7 weddings to attend this summer, which is crazy. So but what is, what is very difficult work about all our events? It's very much focused on today is the short term future. It's hard to think about long term. Things are going to be sad. It can be difficult. So lots of fun things in the coming months, but we'll have to see you later for. Perfect after that. So many weddings. How about you Gwen? Yes, so ALS suggests to uprooted my husband and I from city living to suburban life, which is which is just fine. I get to be within 20 minutes from my nieces and nephew. And they are, they're all under 8 years old. They are all so funny and like, keep me laughing and keep me cool too. So I love being around family and I'm so much closer, location wise now. And how about you, Kate? I appreciate Leah's comment, you know? Your hand is a diagnosis where they tell you you have two to 5 years to live, compared to interviewing for my first job where they ask you, where do you see yourself in 5 or ten years? Yes. My craft and sarcastic. Alive. So before retirement, I had plenty of money and no time, so now I'm trying to figure out having all the time, but now those money and less independence, but we my husband and I are going to Napa Valley for his birthday and February. Awesome. And then, yeah. I had some cool information for you. Oh, great. Yes. Yes. You ladies are inspiring me to get something on the books. Yeah. Do it. You should still. But we have something very special on the books coming up. We're getting a new puppy soon. Oh my God. I'm very excited about that. We also got a new puppy after a less Kate has a dog. Aw. Has a cat? Yeah. Very friends are so good. Yeah, my puppy is turning two years old. In February. What can you do? What kind of dog is it? He is a Burmese mountain dog. Oh my God, they're so cute. A big, fluffy, a 125 pounds. Thanks to his lapt dog. Yeah, he is awesome. And kind of hinders my travels, but so what besides fluffy dogs brings you comfort? Rude. I'm still able to eat on my own feed myself. I've put on weight since these diagnosis. So have not slow down. Excellent. Food department, yes. So my husband's a great cook, having been out a ton in times of COVID, but a good meal makes me happy. Gwen, you are absolutely right. Yeah, I would also second that. So what are you each most proud of? So first off, I would definitely say, finding these other great women in Korea less story. Because it's so important to do things and find things to connect people. I think a few years ago I would have said, I'm becoming fluent in French. And creating a life for myself there. Which was great. It still is great. But that's so personal. Yeah, I think something that I learned very quickly after I have a diagnosis like ALS in general is that it's most important is doing things for and with others. So yeah, creating this great group of people. Yeah, that's a really cool thing that you've done, Leah. How about you go on? Being a small part of something that's way bigger than me. Whether it's advocacy or contributing to research or trying to be a good person, what if auntie, you know, whatever it is, just doing my best giving my all, even if it, you know, a small contribution to something larger. Yes, definitely. And how about you, Kate? Oh, man. I think I'm most proud of feeling like I've been able to overcome the sense of pity that people try and put on you when you write that phase that oh, poor you. To be able to take that and kind of get people to turn it around when I am interact but it's probably one of the greatest accomplishments I've had in four years. Joining different groups, joining the fight supporting other people, I've often been asked to meet with people when they are newly diagnosed. And I think that's the positivity and the attitude that I'm surrounded by at her ALS story that each of us comes in, ready to fight, not roll over and accept a really short should be life. But to really strive to make a difference and enjoy and appreciate every moment we are given. I was a rockstar answer. Thanks guys. All right, so let's end with the classic question. What do each of you want to tell other women who are facing a similar diagnosis? I can go first. Okay. Now go on, get.
"als" Discussed on Sounds of Science
"We love them. Yeah. So we kind of mentioned this earlier, but just to circle back to it, if there have been any times where you have felt that you have been overlooked or misdiagnosed or dismissed because of your age or gender, not just from ALS, but from any malady that you might have had. Just a few things I've heard that I wish I could on here are, oh, you poor thing. Or you, oh, or you poor girl. Or the best one is a boy, you're too young to have ALS. And that's exactly why Lee has started, you know, her ALS story were trying to change that narrative. If the three of us can get ALS, anyone can. And it's not just Lou Gehrig's disease. It's not, it's not an old white guys. Anyone can get it. I think this is kind of a problem in historically, definitely in science in general, is that we kind of have set this default as white men are kind of the base standard for human bodies and everything else is kind of just like a variation on that, but that's not a good way to look at it, obviously, because things get overlooked. That pregnancy question Leah came up at mass general and they looked at me like I had ten heads. And I can not be the first person asking this question. Can I get pregnant? What would it do to my body? And all of them looked at me and shrugged. What's going on? I think it's crazy. 'cause you see a lot of young couples where maybe it's the male that has ALS. I'm pretty sure you have a diagnosis. There's a baby. And for them, there's no, nobody's supposed to get them crazy. But for some of us, yeah, they wouldn't approve. Right. On that on the note, while I was in a trial, I almost wish they gave me regular pregnancy tests because they kept reinforcing. You know, you can't get pregnant. Are you guys using contraception and, you know, you can't be pregnant and it was such it's still raw. I don't know. When it's not going to be robbed, but at the time it was just a lot of stuff. I have to pee in a cup every time I go to the hospital. Yeah. I guess that way you don't have to talk about it, but. Mine's blood work, but Gwen, at least they still thought you were having sex. I have a coordinator who was like, are you and your husband still sexually active? I'm like, weird. Yes. My goodness. I'm not like old and shriveled up. Yeah, so moral of the story is please don't put ALS in a box. It's not going to get us anywhere. So speaking of the future, what kinds of plans have you all made for the immediate future? Leah, you want to start? Immediate future. Continuing to do cool badass things with these women. They're on top of that. Lots of traveling. My husband and I have like maybe.
"als" Discussed on Sounds of Science
"Just the. And how about you Glenn? Yes, so I met Lea last year, she is an absolute sweetheart. She had a vision that I loved and I asked Leah, you know, are you are you sure you want me in this group? I'm turning 36. Have I aged out? Leah said, of course not. Women diagnosed before our 35th birthday. So you fit squarely. And yeah, and also to lean Kate's point, other members of the group feel really comfortable in this space and I was making with one last night who said, I didn't know that there was anyone like me out there. Meaning a young woman diagnosed and, you know, going through all the same things, we're going through. So it's a really safe and hopeful space to have relatable conversations, a space I've found like no other. Well, that kind of brings me to my next question. I was wondering how your treatments have gone, not just physical and the medications, but what kind of emotional support have you guys gotten? Oddly enough, I've been with my therapist. Four and a half years. So I engage with her before my now husband was moving in. Just some general anxieties, and we were just about to part ways when I received the official diagnosis and she was completely out of her depth of knowing how to treat ALS as a therapist. But what we have found in the past four years is it's a lot of the same anxiety or grief over the loss of this future. You thought you had, she has been the best processing support. My friendships have been the best. I need help trying my shoes or I can't carry my bags into the house or random things that all the sudden chains, so the day to days support is Friends, my husband's been huge. But I haven't really other the ALS story. I haven't found a group that connects with me and can really understand and empathize where I'm at in any given moment. Yeah. Yeah, that makes sense. How about you, Gwen? Yeah, so it was my psychiatrist who urged me to have a second opinion after that anxiety misdiagnosis and she was the one who said you don't lose your balance and fall from anxiety. So I went to a university level medical center of excellence and that's when I started getting answers. Unfortunately, she was amazing. Unfortunately, she left the practice, I found a grief counselor and in living in San Francisco and to see someone in the city was going to cost me $250 an hour. That was not feasible. So I was a few years ago, I haven't seen anyone since. And can I just say, and I don't know if I'll leave this in or not, but when you say you were misdiagnosed with anxiety, that just makes me so viscerally angry on your behalf because it sounds so much like the old timey, oh, she's just hysterical. Right. Yeah. It's horrible. And a lot of people have to worry about that. Exactly. Can you say that again, Leah? I was just saying that there's so many women God very similar stories, big one. It's so horrible to hear. It's not uncommon. At the same time, like it's sad. It's really important to find people that do fully understand what you're going through. So that's what super cool with our ALS story. Because unless you have to deal with ALS every day, you can never really understand how difficult certain aspects can be. Yeah. Do you ever meet as part of her ALS story together? We have Zoom meetings, but in person, they kind of depends where people all over the country, even a few people in different countries. So we've never had a huge cat together. But I feel about have my in person here. We did attend the fundraiser for a project ALS in New York City and there were four of us that were able to attend and I know my husband in particular found that super beneficial to meet the other husbands and connect with the males who were supporting the badass women. So I think that brief never action in person. I had a huge impact on us. Yeah, just a quick plug for project ALS and the incredible work they're doing around drug discovery and supporting women in general. Yeah, it was started by a woman, I believe. A Broadway producer isn't she? Yeah. Yes. They're awesome. Yeah,.
"als" Discussed on Sounds of Science
"My bathing and toileting on my own. So it's slower and weaker, but I feel pretty lucky to maintain the strength of myself have. Leah, how about you? Where were you and your life when you were diagnosed? So I was at the time I was 26. I was just finishing up a masters. In Paris and focused on business management. And so getting ready to start a career in management consulting. I was living with my boyfriend and things were really coming together. You know, growing up for years. As a student, you're stressed about finding the right job and being in the right spot, finding somebody, they even want to spend your life with. And so I think those things are really just probably a good place. And then I'll decide. Yeah, like Kate said, it's huge. Scary thing comes in. But it just drops all of that. If you realize that the fancy job that doesn't matter anymore. Because you're your days are probably numbered. So it was a big blow for a long time, or not for too long, but for a little while. I was able to continue on with my plans. Stayed in Paris, but that would be about a year later. I decided that it made sense to start spending more time in the U.S.. Because the health systems are so different. And as far as clinical trials, it's going to research in general. The options are a lot better. In the U.S.. So I've spent a lot of time in New York because I follow an expanded access program at Columbia University. And it's also good to be a bit closer to family. So I kind of split my time between Paris. And New York and yeah. And how has your ALS progressed and have you been involved in any clinical trials yet? So my AI has progressed pretty quickly. I felt like it progressed more quickly when I realized something was wrong. I began my feet and what a year I needed to use a wheelchair. And then about pretty soon after that. I lost a lot of control for strength in my arms and my hands. And I also thought about a year, because while later, my diaphragm became weak. So I need to breathe the machine at night. After I started the EAP, I felt like the progression did slow down. And so today is kind of the staff. Continuing on, but so it's like a year when it all pretty quickly. And then it's a plateau to have said. And I've never been part of a clinical trial. The one that I thought I would be in, took a very long time to set up. So I thought it wasn't expanded access program. Which I'm very lucky that that was a possibility. Because as many ALS patients know, clinical trials are very tricky. And finally, Gwen, how about you? I love this podcast. Well, thank you. I can't believe I knew we were all very similar. Especially where we were in our lives, but truly the three of us were thriving in all of the same areas in our love lives, professionally, traveling, seeing the world exploring that exactly where I was, which is kind of ironic that when early symptoms started manifesting, I was told by my primary care doctor, oh, wow, you've got a lot going on. You've got too much going on. And that's when I was missed diagnosed with anxiety. So I wrote that misdiagnosis for a year and a half before the official diagnosis came in. On the bright side, in that year and a half, I got married to my best friend went on a beautiful honeymoon, was doing really well at work, so so much good happened in that time. And then shortly after diagnosis, I was admitted into a clinical trial, his brain, with a really promising therapy. And being in the trial gave me hope. And how has your ALS progressed Gwen? Yes, same as the other women I am extremely fortunate to be a slope progressor, you know, another common thread between all of us, we have ALS, what ALS doesn't have us. We recognize that and because we're relatively slow progressors were relishing in the community to continue to travel and to raise our voices for advocacy and so much more so that is such a central point of her ALS story. Well, that brings us right to our next question, almost like you're a professional podcaster who can segue between topics perfectly. How did her ALS story get together? How did it all start? Leah, let's start with you. So about a year ago, I had stopped working. And found myself with a bit of extra time. And thought I really want to get involved in ALS advocacy. Since the very beginning, it's hard because you look out and I didn't know of anybody with ALS that looked like me. You know, you see Lou Gehrig? Goosey, maybe Steve gleason. Stephen Hawking. So these are all males. Some of them young ish, but still it's hard to not say, you know, there's nobody else that has this disease that's that I see that has to be I was having a period or wanting to get pregnant maybe one day. And so I really kind of urine to find other young women. And so with the help of Gloria Andre and I am ALS, we started. A campaign to gather stories of young women with ALS. And that worked out pretty well. And transformed into her ALS story. Which I found it in April of 2021. And Gwen and Kate, when did you guys come in and join Leah? I would say.
Joy Reid Promotes False Story About Ohio Patients Overdosing on Ivermectin
"They're falling apart. People are taking horse space diver Mactan Jim overflowing ODS everywhere. Oh, Diz! ALS all over the place. Everyone. Oh, ding! Oh, my God. I took horse piece They Oklahoma hospitals. It's so much so the Rolling Stone story so much so horse Pacers in Oklahoma. That they're not even taking gunshot wounds anymore. Jim, You believe that you walk in You're like I've been shot. What happened? Nine millimeters and chest the bucket to make it hold on. We got a horse paste. Er, there's our Sir Horse Pacer. Come on over a gunshot guy bleeding. I'm collapsed Lung. We'll get to you in a couple hours. Go back home. Take an aspirin. Call me in the morning. Horse Pacers. Come on. So joy Reid is so stupid. She didn't even think to have someone call the hospital. About the horse Basters overdosing Joyce. Too dumb. So Joy, of course, brought the story on her shelf for the umpteenth 1000 time getting completely humiliated because she doesn't follow the Bongino rule. What's the Bongino rule? Anytime you see a stupid story about coronavirus or Donald Trump? It's probably a lie. Wait 72 hours and it will be the bunk. If Joy would apply this rule. If joy would have went right to the police. None of this would have ever happened. She doesn't seem to get that joy. If she would just wait the 72 hours. This kind of stuff wouldn't happen, Jim Play cut. Six. Here's Joy Reid hilariously dolling out the misinformation as she repeats the horse space talks. Check this out, so things are clearly bad. But they're being made even worse by people who have refused to take the vaccine and instead are swallowing horse paste. Emergency room in one rural Oklahoma town is being overwhelmed by people overdosing on ivermectin, the horse deworming medication. It's gotten so bad that gunshot victims gunshot victims are having to wait to be treated. Yeah.
"als" Discussed on Pfadi uf d'Ohre
"Eggnog. both free. That up clumber pop does does add. Beef erupted on the ibi. Obviously both tonight at the neighborhood at nape its own the astros abruzzo hang congress to get lucia rich visit uber ow rattling facto. The to plant replant even think is just how to read in dark black fish. Some smart hoosier. Paul martial nations yet obligates. Komo consumer betsy hawks from the doctor who owns the commandant babe. Ruth skits gets proposed in partial abandoned out up scruple. The dasa saying we've been other naive to sean. Nice chalets non nonsense to shop. Newell will need cinquieme story on amazon.com in india. Aber the full amount car with others from stale the inish this not. Obviously there's a is not does now. I'm just called petition. Cool to same orange massana steamer car. Em cordell koto spend the weekend would fend plum Obsidian four don. Thanks for goodwill kitties sloth exceeding that aim click on made some is h call when amy said liberty but you can't committee they saw is age upper limits up candidate former. Okay said we fought that a sharp subban mama to their hands former. So yeah okay. The cd birzele owned schloss houses to recco house physical for the up. Slow salvati so lucy. She seems a little sissy. I'm supposed to them for this. Sierra matana midday out stock separate all the switch this manetti okay. All for them but people show or cool. We debbie law with michigan sitting up on the craziest which is new washes of shoes. Your sewing observable kennedy mafia against stage. It's game young form nice. They copa hope their actually for footer story for them plan podcast abyss blob extremely on. We'll talk easy frog for dinner for the actually on the maids newton. Mutual luzern podcast. That's really sad trip. This is the air start a saucer of all liberal bonds of up lad. Best succeed house main had thanked. Some bill does mitt officia long updated bomb forces. It does not focus so stories but did hammer story for party from the large fall from the activity. Todd did bombed dot. org hulu excuse succeeded flat tax. Disclose dixie but the on the story hate standard with the to they do that a flash supposed to just signal him cubs more sir. Did this more. Hey mckearney say they need to go say sandwiches no too bad gals ellen. Famo- royer absorbent ledge sword in law sweater.
U.S. Postal Service Finalizes Plan to Slow Some Mail Deliveries Oct. 1
"Down some first class mail delivery part of a cost cutting plan, effective October refers. The Post office is going to add a day or two delivery times for some periodic ALS and other male but about 60% of first class mail will remain unaffected. Tomorrow night. The
Team USA Overcomes Sluggish Start vs. Spain, Advances to Men's Basketball Semifinals
"Down ten and third quarter but one by fifteen all they did having grandparents. They made seven threes on eight possessions. Him in lillard and somebody else. That'll do it like that. Yeah so they play. Australia in In the semifinals and those are probably the two teams that was. Most people thought that was gonna be the finals. But the causey usa loss to france it's now going to be the semifinal so probably the best game is the next one winner that has luca but besides luca beat them in vegas. Als are australia. Starts five nba. Yeah
Every ALS Patient in New Jersey to Get Free Eye Gaze Technology
"Our next door. He comes to us from aol. News today is written by mary chapman. And it's called every patient in new jersey to get free. I gaze technology and this story talks about a new partnership which allows every individual in new jersey who suffers from a ls which is about four hundred folks in total have free access to i gaze technology. Now what does that actually mean. Well it means that a one point one million dollar effort that is being underwritten by new philanthropic organization called renew jersey. In collaboration with the nonprofit bridging voice are working together in order to bring i gaze technology technical support computer support and other supports to all four hundred patients in new jersey in order to help them communicate. Now of course it says it couvert. Nineteen pandemic has exacerbated the isolation that many patients feel as it has for for really kind of everyone. This is a very cool. Partnership it does use some different pandemic relief funds that went to new jersey and agreed program to get this assistive technology in the hands of individuals. Who can actually use it. Goes out to talk about some of the players in this project and everything but it does look like all you have to do to qualify as live in new jersey and heavy. Ls
Report: UK Military Failing to Protect Women From Abuse
"In the British armed forces, victims of bullying, harassment, discrimination, serious sexual assault. They're being denied justice by woefully inadequate and military complaints, process and justice system. That's one of the main findings of a report published by the UK Parliamentary Defense Committee. Which had evidence from more than 4000 women, including veterans and those still serving 60% said that experience bullying harassment and discrimination in the British armed forces are defence correspondent Jonathan Bill has the report. What's his life? Been a female soldier and what? And asked, I couldn't know. I answer. Oh, boy, I'm a soldier. This is the Army's latest recruitment campaign. It suggests gender is not an issue in today's armed forces, but a report by MPs paints a very different picture. With women suffering disproportionately from bullying, harassment and discrimination. And even sexual assault and rape. The conservative MP Sarah Atherton led the Commons Defence Committee investigation six out of 10 women in our evidence. Said that they don't make complaints because of their replies ALS and reading questions. Put some pressure on this morning. Hey, there we go. Women make up around 12% of the regular armed forces. The report highlights practical issues that need to be addressed, such as being given uniforms and body armor than actually fit. But MPs say they're also gravely concerned that women in the military a 10 times more likely the men To experience sexual harassment. There's so many more instances like mind that don't get reported, because you're not believed you're asking for it. That's the impression you get the fear not her real name was an officer in the Royal Navy, a woman's place. Decided it was up to me where that was, and it was in the Navy. Like the other services. The Royal Navy, too, is trying to recruit more women. But the positive experience for many doesn't always match the reality. For some, it's the old
Dozens Dead in Germany and Surrounding Nations After Heavy Rains
"Least 117 people have died after severe floods devastated parts of western Germany and Belgium. Authorities have not been able to get in touch with hundreds more because mobile phone networks have collapsed and flooded areas of Germany. That also means families can't track their loved ones. The rising death toll marks Germany's largest mass loss of life in years as me Nicholson reports from Berlin. Climate change has arrived in Germany. These are the words of federal environment Minister Svenja Schulze sent in a tweet in response to news footage showing destruction and desperate families perching on rooftops. Firefighters in the states of Rhineland Palatinate and North Rhine Westphalia say the situation remains chaotic and that electricity and cell phone networks are down. South of Cologne. Police officer Patrick Right. ALS told public broadcaster A R D that the rescue services are struggling to keep up. Uh, the current of the water running past. The elementary school is too strong for our motorboats. We just managed to get the kids out. But that was the last trip will be making over that way today. An entire district of the ancient city of trail was evacuated on Thursday, including a hospital and its patients, some of whom were just out of surgery. And some of the worst damage has occurred in the wine region of our violet, where entire villages have been cut off by torrents of flood water. In the town of Schultz, houses collapsed and dozens of people are unaccounted for. Expressing distress at the news, Chancellor Angela Merkel said quote heavy rain and flooding doesn't quite capture what has happened. Referring to it instead as a catastrophe, he told the Indians are catastrophe and even follow on hub. I'm grieving for those who lost their lives in this disaster. We don't know the death toll yet, but it's going to be high. Some died in their basements, some as firefighters trying to bring others to safety, and my deepest sympathy goes out to their
Lawmakers take dueling trips to border amid concerns about migrant surge
"In Washington, are visiting the southern border and that his surgeon asylum seekers, Democrats and Republicans, making two separate trips to the southern border to tour facility is being used to house migrant Children. 19 Republican senators, including Ted Cruz of Texas, toward the facility housing newly arrived migrants in McAllen. They're sleeping on the ground and pens that have been built to hold them. It is inhumane. It's a crisis. Meanwhile, Democrats visiting a facility in Correze, ALS Springs representative Ellen Omar, There is a crisis happening with our neighboring countries because we can address migration without addressing the root causes of migration, like a judge in ABC News Washington no timeline yet, but White House press secretary
At least 100 people arrested for illegal street racing in metro Atlanta county
"Than 100 people arrested in a street racing bust in clay. Dayton County was the latest crackdown on racing in metro Atlanta Public information officer Aubrey Aubrey ALS Stroud playing County police officers were issued a challenge to combat street racing in the county, and we answered it this morning, A total of 75 adults were arrested and charged with Lord Goring or prowling with some being charged with possession of a firearm under the age of 18. 27 Juvenile's were arrested and their parents were charged with curfew violations.
Nearly 100 Arrested in Atlanta Street Racing Roundup
"Than than 100 100 people people arrested arrested in in a street a street racing racing bust bust in in clay. clay. Dayton Dayton County County was was the latest the latest crackdown crackdown on on racing racing in metro in metro Atlanta Atlanta Public Public information information officer officer Aubrey Aubrey Aubrey Aubrey ALS ALS Stroud Stroud playing playing County County police police officers officers were were issued issued a challenge a challenge to to combat combat street street racing racing in in the county, the county, and and we we answered answered it this it this morning, morning, A A total total of 75 of 75 adults adults were were arrested arrested and charged and charged with with Lord Lord Goring Goring or or prowling prowling with with some some being being charged charged with with possession possession of a of firearm a firearm under under the the age age of 18. of 18. 27 27 Juvenile's Juvenile's were were arrested arrested and and their their parents parents were were charged charged with with curfew curfew violations. violations.
Major League Baseball to hold first Lou Gehrig Day on June 2
"Garak joins Jackie Robinson and Roberto Clemente as players who are honored throughout the league I consider myself the luckiest man on the face of the earth June second marks the ninety sixth anniversary of when Gehrig started at first base for the New York Yankees in place of Wally pipp starting his record streak of consecutive games played June second was also the day in nineteen forty one Gary died at the age of thirty seven Amiot trophic lateral sclerosis or ALS I might have been given a bad grade but I've got an awful lot on June second each home team will have for a LS logo's in ballparks to mark Eric's number for money will be raised to fight ALS also called Lou Gehrig's disease I'm at Donahue
"als" Discussed on News 96.5 WDBO
"ALS Jonasson want from me? When you're sober and find after Connie's this tricks, go, sister. I'll come running. Sandy. Oh, God, God don't never can be too much. What Gaza simply dangle. Just say no, no See, that's the thing. Mm hmm. Later sent coming. Do not really can't know that bothered by the human race who must be terrorism. I'm going up to room becoming almost 21, don't you? Wow. You better get that goes to me. Your fun. Bigelow, A lumbering charity run was presented to me single. Come back when you're happy, you know? Yeah. No, no, no. Come on. You know how I was gonna throw Latino protector for this Latino that off? Yes, way. Just the same thing. Go. Bed last man, will you? I think my life has evolved. What do you think He must hate me. We may get us defecate on. Hey, wait. See those moving day sees bulldozing go. This is a rumor. McCracken Sonny Gaza. Nothing except this. Your character on a day. Come on, come as a mechanic. Oh, God. Look at them. Your mother came in. My thing was a good dream. Is it that We're good to go now to talk. What There's a dog who's ever done, cousin. Yeah. I just got done. Great guys. I got it, is it that I Come on. Oh, come on, man. The only man you okay?.
Evanta Malbec 2019
"We've got a very inexpensive wine. The vonda e. v. a. n. t. a. mullebeck twenty nineteen from mendoza argentina. It's from all d. And of course it sells for four dollars and forty nine cents four fifty. They found a way to get a penny under that much. So there you go so it's very cheap wine ma back from mendoza's good. I mean they have a ton of mullebeck rape. There's been years all over the place. You're doing a young lines. Twenty nine thousand nine vintage those wines are plentiful. Those grapes are plentiful so to get a good wine from there isn't unexpected. This puts this wine in at four forty nine this puts in this in the two buck. Chuck charles shaw category. Because he got to pay importer and they got to ship it up margin tina to plug chuck house. We central coast california. It's a little bit. There's some cost associated there that are savings so so i didn't know what to expect with it and it's actually pretty good. It's not a complicated one. What what you get is what you get up bra. It's all the way through the wine put. It's not bad taste is pretty good. It's got some toasty vanilla oak things going on which is which is oak barrel flavoring and at four dollars and forty nine cents. I doubt if they entry used barrels they are kind of expensive. And there's no room in poor forty nine wind for that and there's other ways you can get oak flavoring in and at four for you. Don't care been whatever way they used to get that labor there. It's much appreciate emmett. Take a sip. It's kinda smooth. It's scannel medium bodied. it's got really rich. Black cherry flavor scott. Some black pepper's sop spice. Maybe maybe some cranberry towards the end of it. You know no midfeld like that but it does taste good. It's four forty nine people in europe place where they drink wine bottle wine with their every meal every lunch. Dinner only moved a couple of euros for those those wives. I mean they're made go with know. Pay four forty nine for their wines. So you know when you think about that. You shouldn't be surprised when a wine that's very expensive tastes pretty good and and not being complex. This would go with burgers pizza. You know chicago got we have als beep beep or for tillers would another place where struggled to have this one rack that would make make gay ordinary a dinner even better minute drinks fight on its own. Sometimes food. wine doesn't drink that great because it's not meant to drink graves spent bear with putin and this actually from four forty nine kind of handles both things. If there's a lot of mullebeck some good wineries and argentina the entry level mullebeck. That are really good. And i wouldn't put this up there with the best of the wineries foot as a four forty nine mall beckett actually is fine. I mean if you're at a budget you know you're having a party four bottles of this for twenty bucks in home. People are not going to complain. You ask you how much the wind class golan's guessing four fifty good
McCarthy, Pelosi receive FBI briefing on Swalwell
"Meanwhile, Republicans air calling for Democratic Congressman Eric Swalwell to resign from his position in the Intelligence committee this as House Minority leader Kevin McCarthy and House Speaker Nancy Pelosi received a briefing today from the FBI on Swab ALS association with an alleged Chinese spying. I just think for what I know for what the FBI presented, it is without it. Shadow of a doubt. I have no question as a Republican leader, I would never appoint anyone with that information I have on them. McCarthy, speaking on Fox is the story with Martha
Biden names diverse economic team with four women in top roles to help build recovery
"Group that features four women in top roles, including former Federal Reserve Board chair Janet Yellen as his choice for Treasury secretary. Reporter Jim Tankersley of The New York Times has been following these developments closely. He covers economics for the paper, and he's also the author of the recent book, The Riches of this Land. Jim Tankersley. Thanks so much for being with us again. What do these choices as a group tell you about Joe Biden's priorities What he may do once he takes office. Well, thanks so much for having me Judy. This is a group that is really focused on workers and on labor and maybe one of the most of union friendly groups of top economic advisers. We've seen in the White House in a long time and in particular for policy right out of the gate. It's a group that's going to be very committed on the idea of trying to get the economy up and running as fast as it can as quickly as possible in order to boost worker wages. And it's gonna be not at all shy about pushing additional deficit spending by the federal government in order to get there. And specifically with regard to covert relief, Covad economic relief. Can you tell anything from looking at this group? But what what might happen? Yeah, They've been very clear a number of them from Janet Yellen, the Neera tanden on down on these pics about the sorts of things that need to be done to help. People and businesses and state local governments survived. This pandemic on DAT includes more direct aid tol division ALS. It includes more help for small businesses and in particular age of states and local governments who have big budget holes, But also things like passing pandemic paid leave, You know a program to give family and paid leave. The workers who are on the front lines of code in particular, and I think that you will see all of those policies pushed early on by the biting teeth. So let's talk specifics. Janet Yellin at Treasury, the first woman to hold that job as we were saying, what do we know? Based on her record? What to expect from her. Janet Yellen is a labor economist by training on someone who really pushed the Federal Reserve when she was the chairman of the reserve to keep interest rates low for a long time in order to stoke growth, and I think we'll see more of that out of her hear more of a focus on inequality and unworkable is and you know another thing that she's focused on a lot in the last couple of years is on Tearing down the barriers of discrimination in the economy to help women in particular succeed, and I think you'll see her focus on that as well. It's it's been a big deal for her in the economics profession, but it's something that she is talked a lot about having enormous consequences for the broader economy. And then Cecilia Rouse, who President elect Biden Has said he wants to head his council of Economic Advisers. Not as well, a known name as the others. But so what should we know about her? She'll if she's confirmed, should be the first black economist ahead the Council of Economic Advisers she was on the council under President Barack Obama. She's also a labor economist, ah, real expert in a variety of things having to do with labor and education, and just like Jenna Galan has, as focused a lot of academic work on the effects of discrimination. S O. There are some common themes here with the team. And then there is Tol, the Office of Management and Budget. Neera Tanden, who has been around she's someone who I think is familiar. Too many who watch what's going on in Washington. What do what do we look for? From her? Near attended, runs the center for American Progress, which is a liberal think tank, and she has been on adviser to Hillary Clinton. She's been around Washington for a long time. She is someone who has really pushed on a variety of sort of liberal policy agenda items that is more of a political player than the other two. But I think with Neera Tanden, you will see Ah, focus in the Ownby. If she's confirmed on things like climate change healthcare on you on sort of Not shying away again from running budget deficits. Tosto growth, which is you know a real, I think departure from what many progressives thought they might be getting if I hadn't had appointed someone who was more of a moderate deficit, longer term deficit Hawk Democrat to that position. And Jim. What about with regard to Senate confirmation? These three positions we've been talking about all require Senate confirmation. What is expected for each one of them for yelling for rouse and for Tanda. Well, I think Janet Yellen appears likely to be confirmed. Based on the comments that we've seen in the last 24 hours from Republican senators. She's someone who has been confirmed by the Senate before. So is this is the arrest who I think is like that he converted also in less Republicans find some things in her academic work that they really object to Neera Tanden again as a more political player and someone who's Twitter feed has really offended. A lot of Republican senators may face more opposition and that was signaled by Republican senators in the last day that they don't like that she has taken after Republicans in public comments and so that that maybe get hard for them to confirm her. A lot will depend on whether Democrats control the senator Republicans do after the runoff elections that Georgia in January. And one other thing, Jim. I mean, people look to see the differences between this team and the Trump economic team. Pretty significant difference. Sure, there's just a big difference in how they approach the economy. The Trump team came in with a real focus on how do they sperm or business investment of the economy? How can they do more by taking away regulations by cutting taxes to make businesses happier and get them to spend more money on investments of this team is much more focused on workers. How do they support workers? How do they change regulations or even bolster them? To make it easier for people to work and to make that work pay off with higher wages, so it's just completely different angle at looking at the economy and very different policies that will result Him. Tankersley with the New York Times
Pat Quinn, co-founder of viral Ice Bucket Challenge, dies from ALS at age 37
"The A L S Ice Bucket Challenge. Has died. Pat Quinn died at the age of 37 yesterday after seven years with the disease. Quinn and the late Pete Frates started the challenge after being diagnosed with a L S, which is known as Lou Gehrig's disease. The ice bucket challenge raised over $250 million Since it took social media by storm in 2014. Those of you do not know
Pat Quinn, co-founder of viral Ice Bucket Challenge, dies from ALS at age 37
"Pat quinn. The co founder of the viral ice bucket challenge died on sunday at the age of thirty seven quinn and the late pete. Freights were both diagnosed with a rare and fatal disease and started the ice bucket challenge to raise money and awareness about the condition. The disease has no hope at the moment but the ice bucket challenge revamped that outlook the ice bucket challenge helped raise more than two hundred million dollars to fund research and treatments for the disease.
Co-founder of viral ALS Ice Bucket Challenge dies at 37
"The Ice Bucket Challenge for a lesson. This morning at age 37. He battled Amy Oh traffic lateral sclerosis, often called Lou Gehrig's disease since diagnosis in 2013, the ice bucket video challenge taking social media by storm in summer. 2014. Quinn, talking with Fox News radio in 2015 is great for the A list community we really needed. A new sense of fight new sense of hope. So far, the challenge raising more than $250 million Worldwide. America's listening to
"als" Discussed on Water and The Spirit Podcast
"We have everything can abundance. We are in good health and we are also full of ambition however the day will call me negatively. When we squander wise lose everything and face a great farming destitute times will visit tolls without fail. No matter how rich one is a no matter how much food he has. There will be a time when he is visited by physical privation when he can't even put food in his mouth and chew. It's regardless of how rich you are with the things of this world. There will inevitably comet time. When you find yourself destitute in your heart and spirit. Sooner or later you will be short of the faculty of the mind certain joys and the pleasures of the body before such privation visit sauce. We need to realize clearly that's our lives are completely lost. Indeed we have lost everything in life. Although some people realize this many people are still wasting their lives obliviously. Sooner or later we will lose everything. What then is the task that remains for us. We need to think about the following question. How can we restore everything. That's we've lost. This means that we should think about how we can. How true faith we must look for the truth. Less than two. Into the word of god and examine this truth from now on inside as scripture passage. The lord admonished -als to realize as soon as possible that's we cannot find satisfaction from any religion. Only by we realized this can we.
"als" Discussed on New Equals Reason
"And like I said, I like four off my shoulders start bringing Awareness on any platform that I have to just bring awareness to any cause that can help somebody help get off, you know people doing more research maybe thinking about what they can do or bringing awareness to their platforms about if not the same thing different things box in diseases. and when you when you read on the ALS. Org They talked a lot about the treatment some of the scans. The test they do. They have local chapters. That's what I was looking for is how you can find an area if you want to talk to a chapter or help donate or you know give you a time and maybe you know somebody who's looking for a chapter that have it on here and it tells and different states home from what I'm seeing. It looks like you got about one at least one. in every state Do the als. Org site? And some have more than that obviously, but at least one. In every state which is good. I live in Tennessee. They have the Tennessee chapter. And it's in Nashville. which is pretty much in the middle of Tennessee. I mean as far as when you driving it's probably going to be a very somewhat. Central location for the whole state, you know try to get to a lot of stuff as in Nashville. And they have walks register for a walk to defeat ALS. I think that's one of the big things in their chapters is all the walks. They do to better. Get research and raise money. and if you have any questions, I recommend you do research and talk to somebody if you know somebody if you're interested in learning more just do your research and get with the. Org site for more information. In May is the ALS awareness month if you Google ALS awareness, they do have a 31 facts calendar you can print out for the mother. May I want to thank you for tuning into my podcast new equals reason. I'm your host Deshawn Brown College Station is key to communication. So let's keep the conversation going until the next time. Thank you..
"als" Discussed on New Equals Reason
"$250,000 hundred thousand is the estimated out-of-pocket cost for Karen with a person with ALS. And that's a lot of money in the sense of you know papering. But as far as you know, when you love somebody and you care about somebody. I don't even think any family would hesitate to spend that kind of money, you know, you can't put a price on love and you know somebody that grew up with and chairs. and so to me this that would just a drop in the bucket for you know spending time with somebody especially when you know, there's no cure. Some of the symptoms they have on here. Progressive loss of muscle control that is true. That is something you see in a person with ALS. They gradually lose the ability to speak swallow walk. grabs objects move and breathe I know when I go see was my friend and his father-in-law we talked to him. He's in his wheelchair and you can see noticeably how the muscles you can't really control. Diagnosed difficult to diagnose ALS is often diagnosed by ruling out other disease which may take months or years. Military veterans are more likely to get a LS LS and packs veterans regardless of the branches service in in affects those. Who serve in both peacetime and War and haven't done any research on the veteran Parts. I really won't speak on that part, but I thought that was interesting that that was on there. because I don't know if that's just where you're you know. Overseas, I'm not quite sure on how that plays a part. I did say peace time and War. So there's a lot of things I guess that go on off not been in the military myself so I couldn't speak on that and there is a story on Lou Gehrig. On here and his history and I think he was the most famous person to have it. It's probably the easiest way to put it. What is ALS? It talks about the disease. There it is. See the ice bucket challenge. I remember the ice bucket challenge coming out. And I think it was more with social media thing and I didn't realize it was for Als at the term and I know you don't see them anymore like you used to. But it's it's interesting to know you know that. That is something that it brings awareness things like that are being done to bring awareness to certain diseases..
"als" Discussed on New Equals Reason
"This episode. I want to talk about a l s. Which is better known? as the Lou Gehrig's disease I want to use my platform to bring awareness to it in the last couple of years. I've come to known of a good friends father-in-law who has been diagnosed with ALS and watching. The things that they do with him and the effects it has on a body and talking to my friend about doctors appointments and you know how he's handling new medications and sitting with him myself. It's come more on my mind, too. want to bring away this to this And I met with him yesterday. I talked to him for about 45 minutes and with all the doctors that he has to go visit every three months which is on five hour drive and he's about two years and from when he was diagnosed. He has to be in a Permanent wheelchair and a car which basically, you know, he rides it up the ramp it locks in which was had to be custom-fit off and when he gets in the card, he's in the front. So it locks in. And they drive. Almost 5 hours, then they're in the doctor's office. About five hours. He sees about 9 different doctors. And then they come back. Another five hours. So it's extremely long day. I could imagine the stress levels the the things that they have to go through and he was explaining to me some of the things that you know, you have to do before I see these these doctors. So he was saying that you own know sometimes you can't eat because the medications when they do the throat Scopes and Things like that and just tell them to my friend over the years and going to their house and then been around them. His father allow worked every day since he was a teenager. He had the same job to he retired. And that was I think three or four years ago. And they have a form. So not only did he get up early and go to work do his time at work. He get home and every day he'd work on the farm. So he was a very active person that we just set around. Never just you know laid in the bed all day. I mean every time I have seen them myself, I'll be out with my coworker, which is my friend said he'd always be on the farm. You know, they'd be cutting. Hay corn. asking me if I wanted to get out there and help, you know, they got the big tractors out there doing real form work and when you know somebody that that active And you get two big diagnosed with something like this. They go from being really active to basically I'm sitting in a wheelchair because of the way this disease affects the body it basically shuts down all your organs to where you can't breathe and you can eat off and the easiest way to describe. What happens is you die of suffocation. And there's no cure for it. And it's really, you know, sad to know you have to watch somebody. just go out that way because it's a pretty steadily..
"als" Discussed on News Talk 1130 WISN
"News grades you get the inside story that no one else has and the behind the scenes chatter that the mainstream media doesn't even know about this is the Sean Hannity show I was diagnosed with ALS in August of two thousand eighteen I am twenty eight and they found a large mass right in the center of my brain I was prescribed pain killers was alternately led to her when on my third deployment I was assaulted by my supervisor instead of wall we a diagnosis in the same why me I mean really turned it into a positive and said okay what can I do make a difference that's why I fight they have the case my surgery was very successful they got a second chance and so I felt very compelled to do something with the days that I was given I wanted to give back I'm a compliance supervisor for a substance abuse treatment facility in Arizona it's where I got clean and sober I'm able to use my past trying to change their lives I work as a veteran care coordinator we do a lot of using our stories and what we've gone through and our recovery to help other veterans I'm inspired every day by the incredible stories of resilience often times the very things that almost Russia are the things that can help strengthen us and how us losing my dad when I was twelve surviving sexual assault I was able to discover that I had strength that I didn't realize I had I wasn't going to let myself or others be held back or held down again Martha is such an inspiration to me because she has come through her own challenges she uses that as to fight and to serve she's fighting for what's right when it comes to pre existing conditions she's used her history her surviving sexual assault and used it in a way where she can help other people they have a big voice for survivors of sexual.
"als" Discussed on Xtra Sports Radio 1300 AM
"Join the ALS association to walk to the fidelis that help us find treatments and a cure Gehrig's disease find a walk near you walk to the V. A. L. S. dot org this is toward your and it's more than just a bike ride celebration every turn of the pedals help stop diabetes come together to make a difference to raise money and to raise hell if the ride of your life it's ridiculous register today had diabetes dot org slash for diabetes dot org slash tour better life with Dr Sanjay Gupta so who believes in vaccines and who doesn't I'm Dr Sanjay Gupta CNN's chief medical correspondent vaccines are not a matter of opinion they're a matter of fact they prevent millions of deaths around the world every year and they do not cause autism still the Wellcome trust a U. K. medical research charity found that richer countries on the whole have less faith in vaccines trust was lowest in France where only forty seven percent of the people believe vaccines are safe trust was highest in Bangladesh in Rwanda at ninety seven percent to ninety four percent here in the United States seventy two percent of people believe vaccines are safe eighty four percent believe vaccines are effective in eighty seven percent believe vaccines are important when you vaccinate it's not just for your own kids but for all the kids they come in contact with that's why we got our three daughters fully vaccinated on schedule because we care about them your kids too I'm Dr Sanjay Gupta how can you live a better life hi.
"als" Discussed on 77WABC Radio
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