14 Burst results for "Danny Van Lewin"

"danny van lewin" Discussed on Health Hats, the Podcast

Health Hats, the Podcast

03:01 min | 9 months ago

"danny van lewin" Discussed on Health Hats, the Podcast

"Welcome to health hats learning on the journey towards best health. I'm Danny Van Lewin two legged SIS gender old white man's privileged living in a food oasis..

"danny van lewin" Discussed on Health Hats, the Podcast

Health Hats, the Podcast

13:10 min | 11 months ago

"danny van lewin" Discussed on Health Hats, the Podcast

"Welcome to health hats learning on the journey towards best health. I'm Danny Van Lewin two legged SIS gender old white right manner privileged living in a food oasis who can afford many hats and knows a little bit about a Lotta healthcare and a lot about very little. Most people wear hats one at a time but I wear them all at once. I'm the Rosetta stone of healthcare. We will listen and learn about about what it takes to adjust to life's realities in the awesome circus of healthcare. Let's make some sense of all of this unless we seek out our oldest dearest friends my wife and I spend most most of our time as the oldest people in the room at work socially musically virtually pretty much everywhere when it's just us she's the oldest in the room at this the beginning or the end of the decade I hear people talking about their goals. Also their vision for twenty twenty or twenty twenty one a list of what the determined to accomplish habits to change new projects or careers. I think my life is wonderful. I WanNA maintain maybe because I have secondary progressive multiple sclerosis and maintaining. Its own own project. My wife says it's because we're old I'd rather think that were seasoned but old seasoned it doesn't matter or a a new phase of life. We've done most of what we're going to do. I wanted to be a good man to a good woman and raise sons in loved with strong partners who were also great. DADS VOILA mission accomplished. It's all gravy. Now people ask. Are you retired. Well my reply is I'm no longer a boss and employee retired. Feels kind of like marbles in my my mouth. I know you're shocked that I'm crazy busy consulting advising mentoring podcasting music making being an opo walking stretching stretching strengthening. But it's all on my own terms. I'm learning that two letter word. No well sort of perhaps. I'm semi retired. My Friends Cynthia. Meyer makes a business of these gravy years. It's called the second wind movement. She talks about the five rings of retirement growth health finance community and giving back said the thank you so much for joining me on embarrassingly short notice but you know what I was going to just do like an on Mike episode without an interview and I started writing it and there you were and I'm thinking it doesn't be like totally stupid not to call you and say oh. Maybe she could talk while it's letter to finally connect with you again. It's been a while what I wanted to talk to you about. Was Your your second wind movement. This whole idea of how different front life as this stage of life my wife and I were having this conversation last week and the conversation was were so often the the oldest people in the room pretty much almost everywhere we go and what people like talk about is what they're going to do due in two thousand twenty or two thousand twenty one. What they're going to change? What are their new things and I just keep thinking well? I just want to keep doing what I'm doing. I don't really have big plans for the future. She said honey honey world that's about your babies. U2 regret and I mean you're living such a robust life right now which is awesome. We are where we are living. We're very fortunate so we met you were like director of marketing. And you're well into your career and then you decided to make this change like a really a bold move. Can you tell me what was that about was a very bold move so I hadn't been doing marketing for fifteen plus years and I met you as a marketer So the skill set was there. I I had this passion to pursue and Serb a different audience so throughout my career ahead served several different industries several different products addicts and several different audiences. So I have always had this inclination to conserve seniors and so the bold move was to finally do that and what I learned from marketing was a mix of traditional digital tactics. Of course fifteen years ago. Oh I would say the last five years or so. Basically digital into what I learned was the very powerful thing of content marketing and so that's basically a whole bunch of research and focusing on serving your audience in the form of blog articles. And so that worked really well for the companies that have worked for in the recent years so in the last five years I would say and so. That's what I wanted to do for this audience. And so I started by researching and writing articles and predominantly into Alzheimer's and Alzheimer's Prevention runs in my family and the researched it actually touches one in three of us at the It impacts a lot of people and what I I found most interesting was the preventative measures that I found and also I have. My heart is with this audience because growing up I had played music. I play the violin in orchestras and things like that in string quartets but also did some volunteer work in retirement homes. Is that kind of struck with me. Just you know seeing being a whole bunch of elderly folks just kind of waiting on the rest of their lives so I kind of just started by writing articles in serving the audience and then it turned into your more formal thing when I create an online course and I basically focus on educating the audience and giving them tactical tools and tips on Outta basically live a robust life like yourself and I teach a method. That's based on the firings of retirement and breaking it down into micro steps and that's how it started along the way I picked up my certification for being a life coach so so compliment someone going through this course I would. Would you WanNa want coaching. Because everyone's individual purpose or calling or what they want out of the retirement years or their golden years is so individualized so it is and it seems like I'm a I'm a member of your facebook community and and it seems like every week you're welcoming three to five people which is steady very steady. It's steady it's organic. I'm I'm a little busy. I just had a second baby very thankful that that's happening I. It's all about finding the time to research the topics that people blur interested in helping you find solutions in tactical ways to live more purposeful retirement years. What are the themes of what people are interested in the first and foremost team that I'm finding purpose? Let's like a big word that people tend to talk about or they they need help with 'cause it's Kinda like we're trained by society to live in three big linear chunk of life stages so you have education zero zero through say twenty and then you have your work and family. which is the bulk of your life and then you supposedly reached the finish line and then that's the life of leisure and that's it's kind of an antiquated way of looking at it? It was Dr. Ken Dickel that did the research on this. And it's were that stated that again doctor who can deploy all okay okay of age wave so it's more typical you know. We are interspersed especially nowadays where there's technology at your fingertips and so many more opportunities take advantage of so you go through education that you can pepper that throughout the rest of your life you know as you yourself are an avid student of so many technologies right in so many different the topics in so many organization. And then there's working family. And that's the focus of that is going to be sporadically spread throughout the rest of your life and same with major. They have years of leisure right after college and go on to Europe packing her kind of thing were trained to think that you know. We're ready to retire. Alexis chill and that's not the case so not healthy at least will life stagnancy and then that's why there's crazy stats on the rise like Alzheimer's of course but then there's also rising stats depression and loneliness among the elderly and nursing home occupancy and Just living a life of stagnancy Lindsay and Oh my gosh the number of TV that number of hours that elderly watch per week like astounding over forty hours a week. Oh my goodness well I know I know we need to embrace the new way. Okay which which is kind of what you're doing is ample Y- I I mean. I resist thinking about it like that people talk about retirement and I think I'm not retired. I'm certainly not an employer a boss and I'm I'm thankful Foale for that but I'm so busy that retirement just seems like leisure. I don't know leisure like there's nothing wrong with leisure but but I'm busy got a million projects and you know. I have my some paying gigs and some not paying gigs eggs in music and podcasting and advocacy work. And so you know so I've been trying buying on like I'm semiretired because that's not an employer boss part rights but the thing that I keep coming back to as I'm pulling people together to collaborate is that I don't WanNa run anything anymore maybe adapts the not being an employer. Boss you know. I don't WANNA run anything. I don't WANNA business. I mean I have a business I have a consulting practice fit. I say you're running your finger running this podcast. I mean the last time we spoke. You were considering fro. Yeah fifty third or fifty four podcast best fat out. Yeah yes you're right so okay so maybe my not. Wanting to run anything is also outworking for me as a label traditional sense. You don't WanNa rent anything Y- you don't want to run like a team of people who clocking walking out. Let's no I I absolutely don't right. Yeah I mean I feel like I wanna be able to say no and I want to. It's it's worked just maintaining my health and so I need time for that and I play music so I just started started playing in a band so now I'm playing in two different bands and time for all that stuff. So are you good at saying no now now hot really. I've known you to be so tempted by every project that you were interested in which there are many yes us many passions. I do know I not that good at it. So how'd you squeeze it. In the last time we spoke. You had trouble squeezing and music lessons right one band but I I do it. Well how do I do it. Well it goes to your you know in just letting people know that you and I had several sessions together so not only do I belong to your the second wind movement but I also have taken advantage of your life coaching skills. So one of the things that you've talked about.

Alzheimer Danny Van Lewin twenty twenty director of marketing Europe Meyer Mike Dr. Ken Dickel Foale Alexis chill stagnancy Lindsay
"danny van lewin" Discussed on Health Hats, the Podcast

Health Hats, the Podcast

08:31 min | 1 year ago

"danny van lewin" Discussed on Health Hats, the Podcast

"Health I'm Danny Van Lewin two legged SIS gender old white most people wear hats one at a time but I wear them all at once awesome circus of healthcare. Let's make some sense of all of this lefty or I identify as a patient advocate a person patient partners or patient caregiver activists were generalists living donor his mother he identifies as an advocate for organ back to this in partners as independent community benefit practices any of us work alone we benefit the community and it's a professional I tell the story of health hats patient caregivers you've final stories stories we share about the private practice of our work Lavar Hell we have the position. CEO of our independent Commute Michael Middlemen and I took some time away from the P corey patient centered outcomes as usual we began with bs him how he introduces himself. Hey that I am a health care professional who also happens to be a Montana chronic that works with living donors and prior to that I was the CEO of a Tech Company and Okay I'll be sure to include that okay yeah okay this was somewhere I found myself quite often and are I think when I was about four four and a half full come and then obviously as but really they they start to crystallize a lot more than what was happening around that the pediatric institution and they kept missing my veins and in yes and I remember blood getting all over it oh I remember being really upset that my matching sweat shirts pants outfit was being ruined trying to figure out what was wrong with me and they knew I had kidney disease but they it's very strong in my mind that the professional expertise wasn't there taking it to a TV show that I watched which went off the air a couple of years ago that they come to what's actually wrong with the person and oftentimes it seems like liken it to to that where there was a lot of experimentation and trying to figure of three and five and I have my first transplant in January of nineteen I'm so I was turning seven in the spring of eighty you're having dialysis at that I the clinicians warned if you do homedow- assists in with peritoneal dialysis we'll do this type of treatment at home so seven yeah almost seven for the reason I started on Dalasis was that both of my kidneys felt like elephants stampeding my head was was high described it to start dialysis right away I had no more kidneys at all so forget about.

"danny van lewin" Discussed on Health Hats, the Podcast

Health Hats, the Podcast

15:22 min | 1 year ago

"danny van lewin" Discussed on Health Hats, the Podcast

"Welcome to health hats empowering people as they travelled together other toward best health on Danny van Lewin a two legged SIS gender old white man of privilege living in a food oasis who could afford many hats and knows a little bit about a lot of health care and a lot about very little most people wear hats wanted a time but I wear them all at once we will listen and learn about what it takes to adjust to lice realities and healthcare's tower babble. Let's make some sense of all of this this year in for a treat Amy Baxter pediatric emergency physician pain researcher and device manufacturer is the C._E._o.. And founder of Pain Care Labs Amy has been recognized as a Forbes ten healthcare disruptors INC top women women in tech to watch top ten innovative disruptive women in Healthcare a Wall Street Journal idea person and the most innovative C._E._O.. Of Two thousand fourteen from Georgia I confess that after interviewing Melissa Reynolds a couple of weeks ago published last week. I thought I oughta interview. Amy Baxter turns out I had interviewed amy in March and forgot about the episode. Uh a senior moment indeed. Here's that interview from March. It's long it's over an hour. It's jam packed full of valuable information about pain and pain management. I learned learned so much. If you have a short attention span like I do download the episode or the transcript in the show notes and save it for future reference also this is the first episode with a podcast sponsor Sir listen for my introduction to abridge a software APP for people like us about midway in the episode. Here's the interview enjoy I hello oh thanks for joining me so amy. How do you enter introduce yourself? When you go to a social engagement it depends on the social engagement but it's kind of difficult as a pediatric emergency physician Asian who has transitioned to entrepreneur in the paint space full-time so I usually say I'm create her pain relief devices tendon when it becomes relevant talk about the medical background okay okay? Where were you in your life when you first realized that health was fragile? I had an accident about four years ago where I broke my neck back boogie boarding in Hawaii and truthfully up until that time I had felt really resilient despite being in order Z. Medicine despite seeing how fragile health was it wasn't personal until I came patience and then all of spiralling realities that would happen without me being air or with knee in a halo or with me in a full-on along paraplegic chair for the rest of my life. All of the different possibilities started becoming extremely real in the moments after hitting my head on rockets light. Oh my goodness we've met virtually <hes> in several venues around pain management seems like you've had quite a trajectory of perspectives on pain so I'm wondering wondering if could we start like early like even as early as your young adult days. And how did you think about pain before you entered a professional life. The interesting thing for me is that pain was not as much an issue as was waste wakes yeah so unnecessary pain or unnecessary nausea or unnecessary suffering of any kind I grew up really poor and so anything that was able to be <hes> done more cheaply more efficiently and more effectively Abbas really where I was interested and so pain didn't enter into the equation is much for me. It's a it's an interesting thing because I I am very aware now of the issues of needle fear and the psychology of barriers to health care so I try to avoid sharing my own perception of needle aid because I don't want it to undermine the very real experience for people who have psychological barriers and issues. I want to normalize that a lot of people have needle fear and a lot of people react to needle pain in very different ways but the pain part didn't become something that I was passionate about until not into medical environments where people were being hurt unnecessarily or were there was nausea that was not being treated and it was unnecessary. We had things to make us better and faster that was really interested in pain started was that I knew that we had topical anesthetics to block pain. We had mechanisms awesome strictly pain that physicians were using and so that just seems wasteful the my interest in paine became more that that not only are we putting equal through trauma but that it's just wasting everyone's time is making it harder for procedures to get done and it's going against what are I do know Har- pledge was in a very literal did that did that awakening happen while you were in medical school. Well like thinking about that or did that happen before medical school or in medical school I had one really traumatic memory of a man in the V._A.. who had a nasal gastric to order and so without any kind of light gains ray or numbing that ascend for the back of his nose he was held down and this veteran <unk> had five people trying to shove a nasal gastric tube then and it was it was traumatic? It was difficult as a medical student. It was horrifically riddle and he passed away the next day and so so I started to question win procedures are necessary and whether the whole perspective of what the patient needed was most important I actually worked in college in a hospice and so there was a different side of pain awareness it came for mosses because some of the patients who were there had such high doses of opioids that they were sleepy. Cavani had didn't recognize when they're visitors there so one in particular had told me that she didn't want her pain medicine. Even though she was moaning as she was going to have a visitor and someone else gave her the pain any medicine anyway shortly thereafter g didn't WanNA fight them and so she slept through the visit of the person that was coming so so it was really as you now pain is very nuance balance between between what the person is experiencing what they want to experience and the helplessness focused on stopping the pain but also having some agency in the degree to which ain't impacts the rest the life yeah I remember from my <hes>. I was an E._R.. Nurse for a while and I remember <hes> my my early days of putting in the N.. Gee To then as you described and early on I was more like could I do the procedure and then once I started d- to become more <hes> comfortable starting to think about what was the experience of the person who was sitting or laying there being procedured. The Internet is such a great insight because when I began to research on pain I vowed that I was never going to use pain as an outcome because it wasn't going to change -sition behavior. That's not what we're taught but into the equation whether you're a procedure or not so my very first study was evaluating lumbar punctures and whether or not success was improved when residents use topical anesthetics because I realized that led by appealing to the desire to have a successful procedure and to motivating people with the shame of failed procedure that learning part is so much a priority of everyone's mind and training nick and I realized that if I could prove which did that using topical anesthetics improved the likelihood success that would change behavior and in fact it has it when I was required before I started this study to. To do a survey establishing that people did not actually use topic on aesthetics because the Institutional Review Board the group at the hospital verifies whether it's a safe study to do couldn't believe that doctors weren't using hello topical anesthetics for spinal taps so I had to I do a survey published that improve that in fact ninety percent of the time but works before we were allowed to do the study looking at the top of fun setting so it is interesting that so much research about pain management is about pharmaceuticals. It's difficult for researchers to find funding for non pharmaceutical solutions to pain and comparative effectiveness research is <hes> somebody once said to me as a lot of looking in the rear view the mirror somebody needs to have already started to prove something before you can get funding to really prove it and and so I think that non pharmaceutical solutions to to pain management gets short rift you Ben doing non-pharmaceutical pain studies for some time so how did you break into that or deal with that dilemma of the pharmaceutical focus. This is something that really only become aware of in the past two or three years because you don't see what's around you all the time. My very first grant was a one thousand dollar unrestricted topical anesthetic study grant or Master Zenica and it wasn't it to me. It was given night apartment just free money here we go somebody wants to do some research on this you go for it and that milia really surrounds us through medical school residency Armas providing your meals when you're tired and post call and you're so grateful that you're getting information as well as Lasagna and there are these small grants that are unrestricted that the pharmaceutical companies can afford to just peppered throughout the system so as a young researcher to realize that I could put Astra Zeneca on my cd because I didn't partially funded with that that is really a fairly insidious prompting of what kind of research are going to do so the the non pharmaceutical research that I began with was because I I was concerned about children having needle pain in and that being a barrier to vaccination so I wanted something that parents could use to take to the doctor with them to block the pain of vaccinations so that the pain part wouldn't be a barrier in order to develop the device and I make prototypes and I was using my kids that it was <hes> a lot of dissonance in the emergency department believing that I had something that could help the children who were being held down and subjected elected procedures if they wouldn't be screaming if it didn't hurt and they wouldn't have to be held down faster so I started a company to be able to all by or N._I._H.. As V._R. Grant which is small business research search and we developed N._I._H.. Is National Institutes Okay so shout out to how as a eunice shriver in US each but they gave us a grant to develop this pain pain relief device without having already done research. There's no way I could have gotten that grant and there isn't a lobby to support magnesium for pain research. There's not a really good Yoga Yoga intervention hot of money. That's just sitting around for someone who is looking for a project and said Oh this is funded by the Yoga Institute a rare ominous Yoga so my own personal journey it had had to start with Pharma and I think that that it's probably always going to be that way because the rigor of doing academic research takes a lot of time to learn be the studies that we base our evaluation in statistical understanding our our Pharma Studies so I'm not sure how easy would be to to train someone to do the kind of research rush without being in Pharma Basis..

Amy Baxter researcher nausea Danny van Lewin Wall Street Journal Georgia eunice shriver founder Melissa Reynolds US Yoga Institute Astra Zeneca Hawaii Pharma Cavani paine Z. Medicine Abbas nick
"danny van lewin" Discussed on Health Hats, the Podcast

Health Hats, the Podcast

21:47 min | 1 year ago

"danny van lewin" Discussed on Health Hats, the Podcast

"There were times when you see. Such breakthrough four them, such incredible breakthrough. And it's simple things but they matter being 'cause. What happens to these kids growing up is they grow up, realizing, how different they are from other kids. They don't realize that there's much more about them, that's like other people than but they only see their differences. They grow up feeling very. They have no self esteem, no self confidence whatsoever. And so any little thing you can do like just getting them out of their parents house, and a few successes under their belt is huge for them because they really think they're going to spend their lives in their bedrooms, in their parents house, and then that's where they're going to live that, that's not what their parents want for them, of course. So opportunities for them to go to college for them to get out of their parents house to work a job, even if it isn't the job the ideal job for them any success at all in the least little thing tells them, I, I did that I could do it. I can do it. Welcome to health, hats empowering people as they travelled together toward best health. I'm Danny van Lewin. A two legged SIS gender old white man of privilege living in a food OAC's who could afford many hats and knows a little bit about a lot of health care and a lot about very little most people wear hats wanted a time, but I wear them all at once we will listen and learn about what it takes to adjust to lice realities and Healthcare's tower babble. Let's make some sense of all of this. Today. We talk with Mary Lawler, a teacher and a trailblazer. And the support of young adults on the autism spectrum transitioning into college. As a special education teacher Mary founded entry to a path to college and success. In college wasn't opened for young adults on the autism spectrum. She opened that door I in high school, and then in college developing a program that created an opportunity for their personal breakthroughs. In the patient caregiver activist world. We often talk about patients included. Mary is an expert in parents included. I'm inspired by Mary's leadership and her compassion. Mary, thanks for joining me. You're welcome. Thanks for having me. I'm sitting here with Mary Lawler. Oh, how will be known each other Mary? You're one of my wife's first friends, and one of her oldest friends, and I've known an for forty six years, and you've probably newer or ten years before that. Yeah. We, we met, when we were fourteen okay? This is a while. Yeah. Do you remember where you were? When you first realized that health was fragile. Yes. I was. Fourteen years old. My father was forty two my mother was in the hospital having a skin graft on her ankle, and my father had a heart attack. Goodness. And I spent that summer taking care of my five younger siblings. So worried about my dad and for the rest of my life. I worry about him dying. Suddenly. Soya health is fragile health is bitterly. Yeah. I'm doing a series on young adults with complex medical conditions who are transitioning from pediatric to adult medicine in this series. I've interviewed people who are young young adults and mid young adults and adults. And some of their parents, then sometimes together and a clinician who works with young adults and I was interested in talking to you. Because of a work, you've done with young people on the autism spectrum who are going to college. I remember you telling me about your work with this group of people. Can you tell me about the work you've done? Yeah. Well, I started out in school districts working with overseeing programming for children with disabilities special education programming about. Ten years into that career New York state changed its requirements for graduation and spaghetti to require that. All students even those with disabilities. Take and pass five region success in order to graduate from high school except for the most seriously. Seriously disabled children. Everybody thought. That most children with disabilities. Could not meet that standard. They did have a. A safety net for them. So they could for the first five years of this requirement. They could take a less demanding exam. And if they got at least an eighty five on it, they could earn a regents diploma that helped, but over the course of the next five years, we really worked, and succeeded in getting most kids through a regents level curriculum and regents level exams to graduate. What kind of disabilities? Are we talking about here while these are children with reading, disabilities, dyslexia and other reading disabilities to graph? Dis- dysgraphia. I can't. Right. They can thoughts in their hands but they can't get him on paper. Well. More general learning disabilities with just don't do. Well, academically, even though they're intelligent attention deficit disorders. Emotional disturbance problems. Asper syndrome. Just all of those in visible disabilities that people like to think our Hui, they're not they're very real to the people who have them and of the people trying to teach them. We really increase the number of students. Earning regents diplomas being forced by New York state to do that. Then, as my career responsibilities changed, and I became the director of special education, and I had to complete the data collection process for the state of New York. I realized that even those these children were getting regents diplomas. They were not going to college. The counselors the guidance counselors school counselors in the school were not encouraging them to go to college. People didn't believe that they could go to college and be successful. So then we figured out that, well, they could be successful in college, if they had the kinds of supports they had in highschool. But colleges, generally don't provide that level of support. They'll give some test, accommodations extended time separate location, but not one on one tutoring. Interceding for the students with professors, which is a huge piece of support he -ffective support for them. What happened was this man approached the school district, I was working for and talked about wanting to start a college program for these students as they attend to college, and we identified as small private college in Buffalo New York, who was very interested in avid in working with us to provide support. We were going to provide all the support for them. They would provide the primary instruction. And so that was the first program that I worked in. This was after you left the school district. I left this district to do. Because myself and all of the special Ed teachers at the high school level knew that these kids could do more. They are smart kits ending up working in grocery stores. They weren't pursuing a post secondary education. So we started a support program for them, it can be very effective. Some of their needs are very complex and they're a little more difficult. But many of them were able to take and pass college level courses with the kind of support, we were providing several of them in out of a first group of eighteen kids ended up earning a college, a college degree a bachelor's degree in everything from business to English literature to accounting, the, the supports we provided were one individual tutoring. If they needed it. Two, and this was so big what came to be called executive functioning support organizational, skills support time, management support. Soft things like perseverence despite anxiety despite a failure to be able to bounce back to be able to say, oh, Cam, not gonna quit just because I had one failure. I'm gonna keep going. The ability to. Sit in a classroom and listen and no, you're not catching it all, and not panicking and running out or quitting. So these are really soft skills that they really need for all of life. But so many people learn it in college in high school and college. These are the skills, you learned that people don't realize you're learning. Nobody teaches it to you, but you learn. So we taught at very explicitly to these students, and there was a guy, Danny. I don't remember his name, but I could get it for you. Once I get home. He did amazing work in this area, identifying what the skills are. And then we were able to really teach them these skills and their crucial. So we did that executive functioning support social skill development social thinking, teaching them how to think socially in ways that they doesn't come naturally to them, basic, life skills, they're Ning to go to bed on time. Get up in the morning. Get to class on time set alarm, so you don't get distracted in the library, and forget to go to your afternoon class. Just time management is so big for them. What was their interaction with the, the medical system while the biggest interaction with the medical system by far was that many of them were on psychotropic drugs? Okay. Medications. A psychotropic is any drug capable of FEC thing, the mind, emotions and behavior. And these are all controlled substances, so we had to transfer them from their treating physician that was now outta town and get them buffalo based physicians psychiatrists at Sarah to, to monitor and prescribed, these drunks. How go it was hard to find good psychiatry treatment. Buffalo is not a small city, but not a huge city, the number of psychiatrists is limited and what I mean by good psychiatrist is not one who knows his or her stuff, but one who understands these students, and that's a subcategory of psychiatry. So did you end up identifying will here's one two three. Yes. That did get it. And then we would work with them. Send art her students to them. Now. And the thing is that second tropic drugs have some fairly serious side effects often. It makes students sleepy. So you deal with not wanting to get up in the morning a lot. It's a big problem for them. It can slatting their affect, and they already struggle with social. Things and saw they don't come across to people is particularly personable our social. So finding the right balance. Right about your interaction with the parents, can you tell me a little bit about that. The program that Iran was very expensive very expensive. Plus, there was college tuition and room and board and all of that added onto it. So the parents of the students for the most part, not always. But for the most part, were very, very committed to their children and maximizing their wellbeing and getting them good education. They were willing and able to invest. Into it. And so the parents were very supportive. I enlarge, always some problem, parakeets, many parents have worked really hard throughout their child's life. Trying to get them to fit into the educational systems and often the healthcare systems that they dealt with. And so in our program, we stayed in very close touch with parents. We talked to them. Two or three times a week. And we made sure first of all, unlike some many things in college, they don't contact parents. They don't think parents should be involved anymore. They kind of tell peers leave 'em along, let them do what they're gonna do. But that doesn't work for our students. And so I found parents, who, who I knew had fought really hard and school districts in, we're off in, like the biggest headaches of school districts, and I knew who those parents were, but they know their stir child better than anybody. And they were a great source of strategies and ways of helping their their kid be successful. So we would definitely access that as a resource, and then we would keep them informed about little successes. Because a student can do something today like pass a test and. That's a victory passing a test is a victory for one of these students. So we would let parents know, hey, he gotta be on this test, or he got to class on time, every day this week, the parents had this constant sense of all, it's working that gave them a lot of hope and optimism for their son or daughter. Some parents because they've had to do so much throughout their child's life. They have trouble letting go we started saying the things that colleges were saying, don't talk to your student. Independently and tell them what to do or if they call you five times a day. Tell them, no. Don't call me five times a day. Call me three times a week. Otherwise, go to marry or go to Vicky or go to Kristen so that they were accessing as, as their support rather than their mom or dad and that helped them become more independent, because some these kids, young adults struggle so much with things. -iety anxiety is by far their worst enemy, and they can be on medications for anxiety and still struggle with severe anxiety especially when they feel overwhelmed or they don't know what to do in a situation. Ration- or somebody approaches them want something from them. They don't know how to respond it just sets them into a tailspin. You did this for ten years. I did it for eight years, eight years, and how how long ago was it? I stopped about four years. So have you say in the last year have you heard from or heard of former students? And so tell me a little bit about that. So what's what's happened in that period of time since you saw them last in their lives? But the next hurdle is successful employment. Yeah. In their field of interest now. So, for instance, Jacob got a degree in accounting. He had close to a four point hall if not for point. Oh, I would say three point eight grade point average graduated with honors from a good college but cannot find a job in the field. And that's because his other issues make difficult for an employer to find enough value in him. He knows accounting inside and out. But he's distracted bowl, he panics..

Mary Lawler New York Danny van Lewin Buffalo executive Buffalo New York severe anxiety Jacob Asper Iran director Vicky Kristen eight years five years ten years forty six years
"danny van lewin" Discussed on Health Hats, the Podcast

Health Hats, the Podcast

15:04 min | 1 year ago

"danny van lewin" Discussed on Health Hats, the Podcast

"So what they were very young. I think they used to think I was the worst moment the word because at our teaching them independence. This is said, but whenever they got sick, I will say, okay, medication time on, we're gonna go by business in my hat's off, surprise. I was always one in up in there, but I had to encourage them that decamp want food in front of your damn move on both of them had to land at young at a young age, that they are the commander John sheep. Welcome to health, hats empowering people as they travelled together toward best health. I'm Danny van Lewin. A two legged SIS gender old white man of privilege living in a food choices who can afford many hats and knows a little bit about a lot of health care and a lot about very little most people wear hats wanted a time, but I wear them all at once we will listen and learn about what it takes to adjust to lice realities and Healthcare's tower babble. Let's make some sense of all..

John sheep Danny van Lewin commander
"danny van lewin" Discussed on Health Hats, the Podcast

Health Hats, the Podcast

12:30 min | 1 year ago

"danny van lewin" Discussed on Health Hats, the Podcast

"I just want to create awareness about what's disease is that people that it's human being to have it. People who are have regular lives of struggles in hopes and dreams also have sickle cell disease in are just trying to live a happy, life, a happy full month. That's all. Welcome to health, hats empowering people as they travelled together toward best health. I'm Danny van Lewin. A two legged SIS gender old white man of privilege living in a food choices who could afford many hats and knows a little bit about a lot of health care and a lot about very little most people wear hats wanted a time, but I wear them all at once we will listen and learn about what it takes to adjust to lice realities and Healthcare's tower babble, let's make some sense of all of this Fatih man, I, I met as colleagues on the same team working for advocates Inc in framingham, Massachusetts. We worked together in quality management for this organization that supports about twenty three thousand people with disabilities quickly. I learned that the team had sickle cell, we bonded over working with chronic illness, and clothing. The team. War. Gorgeous colorful jobs. And I wore colorful bow ties people would ask us if we texted before work to color, coordinate. I've learned so much from Fatina. She was curious questioning driven I actually became more comfortable owning that I was an old white man of privilege working with the team. It's part of who I am. It's okay, it depends on what I do with it. She opened up. New vistas of appreciation of health equity challenges. We've stayed friends and coach each other through various chronic illness in life challenges. I'm so delighted to have the opportunity to chat with Fatina. Now. I spoke with the team as mother, he, Sosa previously, I will edit and post at interview next week. Okay. Here's the interview you'll appreciate the team as poise eloquence and humor as I do. Good morning. I'm sitting here with Fatih Muhammad eagle close close. So thanks for joining me of the team, and I have known each other. Oh, I'm trying to decide if it's seven or eight years or more. We worked together for like, three four years. And added at advocate sink. And we've stayed friends since. Yes. Okay. I wanted to talk to you some about your experience, as you transition from pediatric to adult care in managing your sickle cell. I think, though, I, I wanna ask you, a really generally can you remember where you were the first time you realize that health was fragile. Where I was. Yes, I think, has on seven years old. It was winter and it was my first. Memorable paint crises that had to go to the hospital for. And it was winter assistant framingham, Massachusetts so nest you shouldn't have to record winters, and I was just in excruciating pain on the couch, the heating pad. I miss school that day and I just did not understand why my body was not working I wanted to go school. I love school. I wanted to go play outside in the snow and it just was not my body was not working in. I did not understand or. How to fix it? So that was the first time I realize that. Fragile in that. So that was your first experience with sickle cell like knowing that will maybe you didn't know at that time. A name that had a name. Well thankfully, the year I was born with the year, they started sickle cell screening of all children in Massachusetts, which is actually very from, what I from what I know is very groundbreaking because a lot of states did not have it at that time sickle screening as Commendatore Ie's screening for newborns and sister was born the year before nineteen eighty nine and after six months, she was, you know, a colic, see baby. Nobody understood why she was. Fussy kid will not sleep the night. Sometimes she's just cranking sometimes. And so it was after I was born a year, a year later after the screening fund I had sickle cell then decided to screen her for sickle cell found out that she also had took also, yes. So she owes me a lot 'cause I helped. In your early years of managing this. What was your relationship with the medical system? Doctors, you know, hospitals staff, it was really it was magical. The doctors are, you know, I was child pedia, so is always in pediatric units, nurses. I found that in pediatrics, you know, I don't know what kind of screening they do. But I've always had a mazing, nurses. I can still remember some of their names to this day, and now looking back on it as an adult they've gone above and beyond their jobs. My parents have five kids. So when I would be in the hospital that couldn't always be there every single night overnight. They worked and had other children. So I just remember having amazing relationship with the staff with doctors, nurses, all medical caregivers. And my mom and dad were the buffers between me in the medical group. So, but one thing I do appreciate his that my mom was always very she tried to explain everything to us. But what was going on? And even though she different to relieve in our in our care, if you would discuss things with us, openly, and sometimes to the point where I thought why mums me another kids are safe. They're you waits on them hand and foot. And, you know, so lovey-dovey but my mom, I was in pain. She would I came to the mornings at having pale. She would give me my kitchen and ask is it pain that you're gonna have ruffians? School is the dot cutter pain. He could so close the school, but have a rough day or is it bad that, like you cannot the school need to take a day off? Or is it bad that used to go to the hospital? So they seven eight nine we had to answer questions, and she would make US Open up our own pill bottle, and even though my arm lives in pain, and make a sandwich and get our Cup of water and she really did not baby us. Am. But my dad was really in an all sorts of he was. Yeah, he just could not handle how we weren't paying he babied us a lot, so but now that I'm older. So thankful to my mom for that, because it made me she wanted to make us independent. Now, I know she used to go to the room in cry distraught. But she wanted us to have a life outside of sickle cell. So I'm very, very thankful for that independence that she gave us in allow us to feel sorry for self. So I'm so thankful for that. Do you think that, you know, your mom asking you to describe it and calibrate, you know, how serious was it was that sort of the beginning of your being able to speak up for yourself and have words to describe? You know, it seems like part of speaking up for yourself is communicating your experience. Offer exactly exactly. My mom. She at that time, famous -chusetts very white town. Not it was just the beginning of the immigrant way. And there were many black people in particular, and it was just like a quiet suburb outside of Boston because of the demographics, there were not many even physicians were from Melia with cell disease, the, my sister, and I were some, I think the first patient for our pediatrician to sickle cell, and so my mama cat around this binders of information. So her number one thing for us that she found that she really wants still knows his advocacy, because we have to advocate for us so much. She really wanted us to learn how to advocate for herself. So I think that was like that was a huge concern, and that was all part of the greater plan as I've come to realize. Yeah. It seems like that with, you know, the stuff we've communicated about related to managing sickle cell, whether it was pediatric or adult has a lot to do with pain management. So I wanna like before we talk about that. What are some of the other things you had to deal with in the transition from pediatric to adult services, besides pain? One was, I dream because, as a kid, you know, my mom would get us these interest cooling water bottoms than a new, I had to drink water, but then I wouldn't always do it I was very active very much tomboy and I love to run around and I knew I could do that. But I had to couldn't overdo it. But these are all lessons through growing up. I had to, you know, learn the hard way in a lot of cases, maybe not the smartest thing to go outside in the snow without a jacket and purchase baby snowball fight. That's so fun, though. It's during these experiences at my mom would just be honest, like, okay if you choose to do that you choose to be sick, what's gonna happen. And, you know, like everything your parents say, they don't know anything because, you know, everything your ten so. Allies, about the world, wait works. But after learning the hard way couple times on that, that was like a huge self-care. Let's, that's what it was like, though things that people don't earn to their twenties. I had to really consider at a pre teenage okay? I know my period is coming. She probably say extra hydrated because having menstrual cycle could trigger even worse sickle cell crisis if I wasn't hydrated if I wasn't mum dressed warm more, those kind of being so it. And thankfully, the doctors would also explain this to me during doctor's appointments. Okay. What are you doing to take care of your care? And what are you doing to take care of your sickle cell? And that was a huge part of the doctor's appointments. I figured later, I found out later that the my mom in doctors plan, these prep talk. Docket staying hydrated? You know, not over exerting yourself. And, and they really, they that was a huge component that I'm very thankful for the doctors besides just giving payment dictation. It was an education, how to educate you about your own outta educate me on my own disease in a way that my, my child brain could understand, so that is draw. If it took drawing the pictures of the sickle cells explaining the vessels that was a huge huge component of my pediatric care that I'm so thankful for, and I really feel is lacking adult care. See the.

Massachusetts Fatina Danny van Lewin advocates Inc Fatih Muhammad framingham Sosa Boston colic Melia three four years eight years seven years six months
"danny van lewin" Discussed on Health Hats, the Podcast

Health Hats, the Podcast

06:28 min | 1 year ago

"danny van lewin" Discussed on Health Hats, the Podcast

"I just can't believe how much enjoying just listening to the birds and listening to the wind it quiets my mind. I, I know you're shocked to know but I've very active mind and just never stops. Which works some of the time if not most of the time. But it's nice to quiet it and just listening. Welcome to health, hats empowering people as they travelled together toward best health. I'm Danny van Lewin. A two legged SIS gender old white man of privilege living in a food choices who could afford many hats and knows a little bit about a lot of health care and a lot about very little most people wear hats wanted a time, but I wear them all at once we will listen and learn about what it takes to adjust to lice realities and Healthcare's tower babble. Let's make some sense of all of this. Good morning. Stay ten of the Camino dishonest. Iago pilgrimage. Today..

Danny van Lewin Iago
"danny van lewin" Discussed on Health Hats, the Podcast

Health Hats, the Podcast

02:34 min | 1 year ago

"danny van lewin" Discussed on Health Hats, the Podcast

"So, like I dropped off. And I confess to feeling a little sorry for myself that I got left. They walked. And I didn't. Goodness. Welcome to health, hats empowering people as they travelled together toward best health. I'm Danny van Lewin. A two legged SIS gender old white man of privilege living in a food away sus who could afford many hats and knows a little bit about a lot of health care and a lot about very little most people wear hats wanted a time, but I wear them all at once we will listen and learn about what it takes to adjust to lice realities and Healthcare's tower babble. Let's make some sense of all of this. I find myself on a pilgrimage. I thought I was tagging along with my wife's hiking group through rural northern Spain, as a disabled person. But one of our companions Mary has been talking about the pope pilgrimage that the Camino dishonesty I go has been for centuries and is for her. I didn't take that in it. I really since I can't hike. I thought I'd focus on recording and podcasting. The experience I was especially drawn to environmental. Sounds in my preparation for the adventure. Myers have become much more sensitive as I walk or more motor around my hometown. More Chirps more barks more chatter more wind David born from North Carolina has been educating me on recording. Those sounds around me headphones and shotgun. Mike amplifying. Those sounds wool listen to the range of sounds. I've recorded I hear urban sounds from a balcony outside the town square in Villafranca del beers. Oh. Now, listen to the rural sounds of a field with cows and their cow bells along a creek and Harare's..

Danny van Lewin David Villafranca del Harare Mary Spain North Carolina Myers Mike
"danny van lewin" Discussed on Health Hats, the Podcast

Health Hats, the Podcast

03:19 min | 1 year ago

"danny van lewin" Discussed on Health Hats, the Podcast

"Welcome to health, hats empowering people as they travelled together toward best health. I'm Danny van Lewin. A two legged SIS gender old white man of privilege living in a food away sus who could afford many hats and knows a little bit about a lot of healthcare and a lot about very little most people wear hats wanted a time, but I wear them all at once we will listen and learn about what it takes to adjust to lice realities and Healthcare's tower babble. Let's make some sense of all of this. Hey, they're glad you could join me. I'd like to pause and take stock of the past six months and look a bit to the future were in the middle of a series with young adults with complex conditions transitioning from pediatric to adult medical care. I published seven episodes in this series. I'm taking a brief break on the series and travelling to Spain. While we're here together. We'll talk a little bit about the series and my travels and reflect on my patient caregiver activism journey I, I cherish the opportunity to be part of intimate moments in people's lives. In my career is a practicing nurse. I thought I had licensed to be nosy. I was a guest in other people's lives, people are often amazing. They face complicated and frustrating challenges jump hurdles find help and relieve boredom with humor. This inspires me. If fuels my fire it gives me perspective. I got a good no. Really, I cut it great. Let me tell you quick story here. When I was in aid at the Detroit rehabilitation institute, I was working the evening shift with a man in his thirties, who had had a gun shout injury to the neck. He was quadriplegic that means no abilities below the neck. He was headed down the hall learning to navigate his motorized wheelchair with his mouth stick. He could barely swivel as neck coming toward us was a man in his late forties, who had had a severe stroke. He was hemiplegic that means no function on his left side. He was learning the mobile is his wheelchair using his right, arm, and leg. He was listing heavily to the side and visibly. Drooling. His twenty something wife dressed as for a dinner date, was traveling behind looking thoroughly disgusted, my guy. Glanced over as he took his mouth from the joystick and said, Clinton, I'm not him. Gotta love perspective and appreciate what you do have anyway in this series. We've heard from young adult in high school and a young adult in college, and their parents. I have two interviews completed with people in their thirties, already through their transition as well as other people and professional support roles for those young adults see the show.

Danny van Lewin Clinton Drooling Spain Detroit rehabilitation institu six months
"danny van lewin" Discussed on Health Hats, the Podcast

Health Hats, the Podcast

11:29 min | 1 year ago

"danny van lewin" Discussed on Health Hats, the Podcast

"It wasn't until recently like the past two years that I realized how hard that must have been for her. I, I don't think I completely understood it until a couple months ago, we actually talked about, like what it was like for her. And I for some reason, I'd never really thought to ask before, but I'd never really asked about what the whole process had been carrying for me in trying to raise me to be good person in, you know, taking care of all of my medical issues, and things like that. When you love somebody, you, you just do it. I would do it all over again. A hundred times over. Welcome to health, hats empowering people as they travelled together toward best health. I'm Danny van Lewin. A two legged SIS gender old white man of privilege living in a food away sus who could afford many hats and knows a little bit about a lot of health care and a lot about very little most people wear hats wanted a time, but I wear them all at once we will listen and learn about what it takes to adjust to lice realities and Healthcare's tower babble. Let's make some sense of all of this, welcome to episode six of the series about young adults with complex conditions transitioning from pediatric to adult medicine. With Morgan Amy Gleason. I interviewed Morgan and Amy in the previous two episodes Morgan and Amy sound like pretty normal daughter, and mom growing out of the self-centered, teen years into mutually appreciative adults in this episode will here. Hear about that journey toward respect and shared support Levin, of course, with humor about the ridiculousness of some of that journey. So thank you guys for taking the time. I don't wanna hurt your feelings Amy but I got a ton more hits on Morgan's interviews. I'm not surprised. Funny. It is funny. You know, I can't predict. Be interested. How about we get started since everybody's got busy lives. So I wanna thank you Morgan and Amy for joining me again we spoke individually before. The follow up with some questions from eleven to twenty year. Relationship has really chain which of course, it would eleven to twenty it just like everyday light, but how has it changed in relationship to Morgan? You're managing your health, obviously, like you said eleven to twenty is such a huge jump in the very beginning. I didn't even understand that. Like what a chronic illness was I thought that you took some medicine and then like a week later, you feel better. You're perfectly fine. Good to go. My mom had to do a lot of the carrying at the beginning. She obviously managed everything and may traffic my meds and took me to doctor's appointments, and things like that, as I got older, she actually started pushing me to what age would you say that was mum? They used thirteen or fourteen. Probably yeah. Then more fifteen sixteen but you are already go in there. By this. Yeah. Some- somewhere around, then I really starting to learn how to take care of my own health from the very beginning are not the very beginning. But when I when I was able to understood what was going on. So she started passing a little bit more responsibility. Over over to me, I just kind of had to learn how to do things, and she always has been helpful in helped me along the way and things like that was it your mom pushing you or you grabbing for control. Or was it both? I think in the beginning, it was my mom pushing 's but not in a bad way like she just wanted when whenever we go to doctor's appointments, she would make me rehearse like over and over in the car. What, what things I need I wanted to go over. In the beginning, it was pushing I hated that because, you know, every teenager doesn't want to do with their told obviously, like as I got older I started realize how important it was in. Once I hit like fifteen that's when my video came out in everything. So I got a lot more involved. I think that was really kind of like a big push to get me ended taking care of my own health. Although I mean I was doing some that beforehand, I think once I got towards the end of high school. I was kinda like, oh, we'll I wouldn't be going to college in a couple of a couple months, like I like better know like what I'm doing. And that was scary at first, but I always know that I can call my mom and ask your questions ever need to do. Concur. Amy. Yeah. I think in the beginning from my perspective, I had to actually. Not give too much information in the beginning, it had to kinda dole it out in pieces, because it would scare her when she was saying she, she didn't know that it wasn't going to be cement. She took it was gonna be all cured. That was a huge shock to her, and that was when I realized, oh, I need to be much more careful how I word things. Can't decide. No, you're gonna have this for the rest of your life. You have to be like this is something, you know, as we go along, you'll have ups and downs. And, you know, explain it more like in a way that she could understand it. And I had to feel more, I think, in the beginning, she kinda trusted me with the medical part. But more her mental health at think ahead to focus on the beginning her friend group changed because she wasn't doing gymnastics interior leaving anymore. I had to kinda more help her with life, coping in mental health, I think, than actually the physical and then as we kind of went along, we developed a way to talk about all that stuff. And that wasn't such an issue anymore. I had to kind of focus more on. We'd go to the doctor, and they'd say, well, how are you doing? Fine. So then the doctor thinks, oh, she's doing well, when the last two weeks, she's been in horrible pain. But that one day, she was having a good day. So it's hard to remember, you know what can I did that? Sorry, when I was, I think around that age. I am I I was very shy in the beginning. I always have been very shy. So I think part of it was the I didn't want to just talk very openly with a complete stranger. I mean, not complete stranger dizzying my doctor for like, especially in the beginning it when it was brand new. I didn't wanna talk at all. 'cause I, I very shy. You know, so I think that was part of it for sure. And then as I got older in. I tended to get right? I did get more extroverted than able to talk to strangers. Yeah. You know, I'm I know you're shocked to know this, but I'm an extrovert myself and I know that when there's a new dock in the mix, I feel like I'm sixteen again. What do you mean you wanna know about everything even though with my primary? I'll tell her anything, you know, any, the good the bad, the ugly care, you know, I just laid out. One thing I really, really struggle with is when I go to the hospital, and I liked to go get my infusions and treatments and things over the weekend. Overnights day. So I liked it over the weekend. So I'm not so I don't miss too much class, or things along, those lines, a lot of times, my doctor is on calls. They have hospitalised come in, and I hate sharing information with them because it's just to me seems completely pointless. The same hospital is comes in every time but I don't particularly like her that much. So I don't really like to talk to her at all or share anything, that's kind of like a, a new thing. So I know that she's not going to be the one. It's changing my medicine or any like she's not gonna be the one changing my doses or tracking my symptoms. She's just kind there, because she has she asked to be early sets my perspective on it. When I think she was kinda judgy with you. When the beginning right? And you didn't like that. Like she made judgments about you without knowing you. And you kind of like, well, why should I trust her? I'm not gonna talk to her anymore because. Yeah. Can do anything anyway? Yeah, I kind of just whenever she walks on kinda like she's like, so how are you doing? I'm like fine. So just like when I was eleven in it's just 'cause I don't like her. I don't get along with our very well. And I think it's pointless, AB you talked some about your concerns about clinical trials and data about Morgan's privacy, and her rights when she was a child. You were making decisions and you were thinking about what we're going to be the long term implications of decisions you were making on her behalf Morgan view. You know now that you're twenty and you're making your own decisions, are you feeling any implications of decisions that your mom made? That you're glad she made it didn't matter. You wish she hadn't made. When it comes to my health care. I I'm pretty odd in this way. I genuinely don't care who has accessed my data wouldn't say not care at all. But I'm very open with it. Like I share, like I post pictures of my medical records online on my blog and stuff. So I really don't care so much about privacy. I haven't noticed anything that from when my mom made a decision that has followed me, I can't really think of anything or at least if there is something it doesn't bother me. I always tried to have a conversation with Morgan about it. Whenever anything was happening like, hey, I'm about to share this or UK with that. And then one that was kinda out than I didn't really worry about it the second time you know, because we talked about it. Okay. And clinical trials. Morgan is always said, I will do anything that I could do to make this disease better into find better treatment, or cure, choose raised money. She's talked she's helped other teens that were newly diagnosed, she's always said, you know, clinical research, I'll do it. The actually the very first visit they took twenty one tubes of blood for her when she was eleven and they lied, demand told me it was only like three or something that they're like, oh, it's, it's just taking a really long time, and I'm like I never gotten my blood drawn before, maybe when you spoke about that, when we talked I thought this was area that I had never really thought about it was opened my, my eyes. In my mind. And I'm wondering in your, your guys community, cure J M. Is this a topic of conversation that other people have Amy when we are in the society, participatory medicine or that crowd that we hang with, this is a big topic of conversation?.

Morgan Amy Gleason Danny van Lewin Levin UK twenty year two weeks two years one day
"danny van lewin" Discussed on Health Hats, the Podcast

Health Hats, the Podcast

12:02 min | 1 year ago

"danny van lewin" Discussed on Health Hats, the Podcast

"Geico this morning process of what you thought your life was going to be like, in how your kid was going to have all these opportunities then you have to watch them every day suffer, and you have to be the one giving them shots, and forcing them to take pills, and on. No, they can't do this in. It's hard as a parent. Welcome to health, hats empowering people as they travelled together toward best health. I'm Danny van Lewin. A two legged SIS gender old white man of privilege living in a food away sus who could afford many hats and knows a little bit about a lot of health care and a lot about very little most people wear hats wanted a time, but I wear them all at once we will listen and learn about what it takes to adjust to lice realities and Healthcare's tower babble. Let's make some sense of all of this. Amy gleason. And I know each other through the society of participatory medicine. Amy is an expert in health data and health technology. She is an entrepreneur and a mom, I interviewed her daughter Morgan in the previous episode of health. Hats, the podcast I learned quite a bit during our conversation. We discuss parenting style cues for calibrating on Tommy, the importance of parent support groups, managing depression, self care, and advocacy by transitioning. Young adults, here's my conversation with Amy Gleason. Amy, tell me a little about yourself. I have spent most of my career working in healthcare, mainly and healthcare technology. I work mainly with electron medical records practice management systems for both the provider and the healthcare system. I've tried to get in our ability working data sharing between providers and patients through the physicians. And I've tried it from the patient side, I co founded a company called care, sink after my daughter, reside, Z's, sinker. I know that. And so I have worked at it from the patient side in the now. I'm working at the little service working in rope ability from the government side. Well, where were you the first time you realized health was fragile? That's a hard question. I think the first time really in my life was with my grandmother had a stroke, and she had surgery and they really didn't have a good solution for her. And so they kinda just sewed her back up and left her to live out the rest of her life in a nursing home, and it was very scary, as a child to see somebody love in that situation. And sometimes we would come visit her and she didn't know who we were other times she did. And that was a lot for a child to can take in. So I guess that's the first time. I really realized how fragile health is. Thank you. What does healthy look like to you to me would mean that you're able to live life? Tearful. I know that I've spoken to Morgan twice. She helped me conceptualize this project. I'm on. And then I interviewed her she's impressive. Thank you. I'm proud of her. Yeah. Lot to be proud of. And it seems like you've been pretty deliberate in guiding Morgan to independence and adulthood. So can you tell me a little bit about that process for you as her mother? Yes. From a healthcare perspective, we're just in general. Start with a general. So my father always said he believes the job as parent is to let your child make all kinds of mistakes, and soon as the getting too far than they kinda grab you beckoned. And I always thought that was a really good way to look, parenting into not be hovering parent, but to also make sure they don't get too much trouble. I tried to do the same. So I think I took a little bit different approach than some of my friends with their kids and was a little more open to letting her try things experience life. Tried to encourage her like while we were doing things explaining why this is why you have to do this adult. This is why I'm doing this. She could understand she went along. So I remember being a college being a little light. What fires? Why be have to do? So I tried to explain a lot more as we went along just kind of help independents, and encourage that, of course Morgan's journey is a little different accounts. She was diagnosed with a rare disease ensures eleven and so she had to grow up faster than your average eleven year old at a lot more responsibilities to worry about taking care of herself. She couldn't just go spend the night with a friend. She had to spend the night with twenty one medication. She takes every day should watch out for symptoms. She had to tell them she was doing too much all that stuff. And so parenting, her was a little different. I was always very deliberate about trying to help her. Learn how to go through the healthcare system because I've seen too many times you go into the office. Visit and Aleve in there on your way home in your forgot to ask you about this or I didn't really get a good answer to that, or I'm not really sure I'm supposed to do next. And so we would practice on the way to visit the hospital, where doctor main doctor was, was about forty five minutes away. So we had a forty five minute car ride every time, so I would come get her to what are your goals at this? Visit what is it? You want to -ccomplish in. I think another thing when you have a chronic disease is kind of hard to explain what's happened in the last month of the last three months. Because all you can really remember yesterday and it's all kind of aerial it. So I'd get her to think about remember last week when you were having this, you know, member think back before this week, cower, you're feeling, you know, ruin you were frustrated because you couldn't do whatever kind of help her recall that Stephan make an agenda for what she wanted visit, and to make sure when they said, how are you doing? She didn't just say fine, the she actually could give a good answer. So I knew some point she would wanna leave and go away and live her adult life, and she needed to be ready for that. What cues were you seeing or looking for as you were sort of calibrating this autonomy and independence? Correct me if I'm wrong. But I'm figuring at eleven. It's like oh shit. What is this for everybody, for the whole family, you know? And then there's like a period of. Of you. Kinda gotta sense and then you're starting to think beyond the next day and the next symptom. And the next appointment as you got past that initial shock and adjustment. And you started thinking a little bit bigger. So you are starting to think of another week another month, she's getting older another year. So what were you what were the cues you were you were looking for seeing that helped you calibrate? Question. So I should say that in the beginning I was certainly not worrying about any kind of transitioning her to anything are even any back. She was very sick when she was diagnosed stand up off the floor can work up the stairs. I don't really let her do anything beginning. I was just a mom, and I drove all of it. I kept the symptom history. I, I took over at the doctor's office, and I would ask her. Hey, do you have anything to add more, get anything wrong and pull her in that way? But she also didn't really have a lot of interest talking to the doctors at that point. She just didn't feel good. You know. So I think there's a point where they're ready to do that kind of stuff. So for Morgan, she got irritated when they would talk to me instead of her. At some point that would. Oh, okay. The next visit Utah can and not gonna talk, unless I have something to correct or interject, and otherwise, it's all you, it's so she would start off. And then she would say, hey mom, is this right? But ever. So we kinda do it together after a while. She just took over in I relate, satin. Listen. So. Okay. I think the other thing is, as she got older into like where she could drive sixteen. She would pick up her prescriptions at the pharmacy and kind of get through all that we've got the, you know, the pharmacy app on her phone, she could track her own prescriptions, and refills. See all that stuff. So I think just kinda over time we added in little things, she didn't really make a lot of appointments before she went to school. But she was involved in the process, we would talk about it, and she would hear me making them, but she didn't really want to call them make them. So she would just kinda give that job to me. But. So that was something she got to college kinda had to learn to do on her own actually call in cigarette. Make appointments she was kind of frustrating, the beginning. It's not the easiest processes, you know. Oh, yeah. And then, like, from a payment perspective of tried to help her understand how it works but the because just on our insurance and I pay the bills for her for most of her bills. I don't know that, that part's totally transition. But, you know, we talk about it in January, deductibles of just reset. When you go, they might ask you for larger payment, the prepared me if you need me. So she's kinda learned that way. But she certainly isn't like totally understanding all that yet. So you've been involved in healthcare, and technology as you are telling us it spend your career. You and I were different because. We're not the norm a lifetime of experience with various parts of the healthcare system. When you look at what you've had to deal with what has been helpful, or what, what would have been helpful to you either just knowing all, you know, but then putting yourself in the place of the people you advocate for in your day to day life, right? So interestingly enough, I haven't lived in the Tampa area, very long when Morgan is diagnosed on so and didn't like all most of my career had had a network of people, I knew and healthcare. So if I needed a doctor, I could just find out who to go to and kind of stuff in Florida. I didn't have that kind of network. So in some ways I was kind of just like everyone else. That was a hard hard process to figure out how to find out which hospital even go to less, which doctor now, her rare disease. It was only one Deatrich rheumatologist that was pretty easy. The rest of the doctors it was kinda hard to figure out how to find the best ones..

Morgan Amy gleason Geico Danny van Lewin government Tommy Tampa Deatrich Stephan Florida Utah forty five minutes forty five minute three months eleven year
"danny van lewin" Discussed on Health Hats, the Podcast

Health Hats, the Podcast

02:58 min | 1 year ago

"danny van lewin" Discussed on Health Hats, the Podcast

"Welcome to health, hats empowering people as they travelled together toward best health. I'm Danny van Lewin. A two legged SIS gender old white man of privilege living in a food choices who can afford many hats and knows a little bit about a lot of health care and a lot about very little most people wear hats wanted a time, but I wear them all at once we will listen and learn about what it takes to adjust to lice realities and Healthcare's tower babble. Let's make some sense of all of this. Hi, it's Danny. I'm gonna share four stories with you. Steady. What I tell you. I get tired more often. I'm more likely to fall when I get tired. My capacity diminishes resort to mobility aids to increase my capacity. I one came then to canes that case wheelchair. So preventing injury. Maintains my propensity mobility aids build my capacity and at the same time, maintaining and building capacity sustains hope hope creates capacity. It's reinforcing, I am one person building my capacity. When I was sixteen I started preparing for the draft. I went to a church for draft counseling and rolled. And of course, the train people to be draft counselors. It started me on a career obtaining profound knowledge of the law and regulations to manage them. I ended up council young men for two years. It served me. Well, when my own mission not to be draft, I built personal capacity personal power and guided others to exercise their power. So I'm podcasting. Now, I joined a community, the podcasting fellowship the sponsors of the community. Seth Godin and Alex Palma created a seven week course about podcasting and platform for about three hundred and thirty international.

Danny van Lewin Seth Godin Alex Palma seven week two years
"danny van lewin" Discussed on Health Hats, the Podcast

Health Hats, the Podcast

15:37 min | 1 year ago

"danny van lewin" Discussed on Health Hats, the Podcast

"This fourth in series about young adults with complex medical conditions transitioning from pediatric to adult medical care. This interview with mother and daughter Alexis and Sarah Snyder, explores, the evolving relationship of a dynamic duo. To make plans about Sarah with Sarah, Sarah has to know her body, well and communicate what she knows and what she doesn't know. Sarah was very clear that she values for mom's health and wellbeing. My interviewing and sound editing, editing. Skills have also evolved. I know I'm only fair, this new medium yet. It's gratifying to learn and to grow. I have links to the previous podcasts in this series and the show notes, I've appreciated, many of your comments and suggestions. I've heard for many longtime blog followers, and new podcast listeners keep that feedback coming. I also pre sheet the support I've gotten from the podcasting fellowship alumni, okay? Here's the podcast. Welcome to health, hats empowering people as they travelled together toward best health. I'm Danny van Lewin. A two legged SIS gender old white man of privilege living in a food choices who could afford many hats and knows a little bit about a lot of health care and a lot about very little most people wear hats wanted a time, but I wear them all at once we will listen and learn about what it takes to adjust to lice realities and Healthcare's tower babble. Let's make some sense of all of this. Hello, one of the things that use it Alexis. That was very interesting to me in that was new to my understanding. You talked about that whole cascade. It isn't like there's a pediatric to adult transition. There's many transitions. So I wanted to talk with you both about. That Sarah from your point of view, the first time that you're realizing that there's something happening in your life. That's different from other kids, what happened then in relationships relationship with your mother. Accents. I think so. Well, I know that between grades like moving up every year in school was a bigger. I guess ordeal for me. And for my family to help me is that I have what I need at school. Other than just the other kids, they just show up to school. The first day of your my teachers cool. But, like.

Sarah Snyder Alexis Danny van Lewin