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Victoria Musheff: Did I look alright. You look great.

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Victoria Musheff: It was just your name and a black screen. That's right, that's right. I don't want to, you know, be too out there. I usually, when I'm on, you know, unless it's a meeting where you're talking to somebody, I'll turn on the video, but if I can just listen, I'll turn…

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Victoria Musheff: No, because, you know, if it's live.

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Victoria Musheff: and you have to go to the bathroom or something, it looks bad when you get up and leave, you know, and people are talking about something. They say, oh my god, they didn't like what I said, or something. Well, yeah, and I'm so restless anyway. I tend to, you know, if I'm standing in front of me, I'll stand up and exercise, and, you know, I'll move around a lot, and it would be distracting. The thing about leaving for the bathroom and not seeing your face is we'll be like, Vince!

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Victoria Musheff: Vince, what do you think? And it's, like, silence. Nobody's there. He's asleep! A lot of times, I'm just listening, but I'm doing stuff, and I'm gonna leave the room or something. Yeah, a podcast. We're gonna get a snack. Yeah, it's like when I used to… I used to do,

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Victoria Musheff: lectures for, the, people about, black musicians in Clemson. Yeah. And,

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Victoria Musheff: Everybody just had their name up there, you know, beat.

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Victoria Musheff: 9 o'clock in the morning. Right. I knew they were asleep, they weren't.

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Victoria Musheff: There'd be 20 of them, maybe.

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Victoria Musheff: Sometimes I might ask a question, and not…

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Victoria Musheff: Oh, that's funny. Thank you. But, you know what, whatever. You know, it's… there's experiences out there you can take advantage of or not. It's up to you. Yeah, yeah. I always like for people, when they've got their camera on, Lee, you need to get this big patient here, they…

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Victoria Musheff: I know a lot of, a lot of times, look at the angles are real funny, you know, it's hard to paint them all.

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Victoria Musheff: MGR's doing okay? He's in Ohio right now. Well, he must be doing okay. I knew he was going, but I just don't have… Yeah. So, I hate to interrupt you guys. Well, we were just here to talk, so… The most important part of the Emeritus College is the social aspect of it, right?

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Victoria Musheff: So, I… Karen Kemper and I are here today to do a discussion on health advocacy, and we decided that we would introduce ourselves so that you would know why we are the people that you should listen to.

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Victoria Musheff: We're not just making it up. But Karen, I'm going to let you go first. What do you want us to know about you? So, I'm gonna say hi to the folks in the room, and hi to our folks in Zoom land.

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Victoria Musheff: we have a little overview, but I'm just going to kind of go au naturel with introducing myself. So, my name's Karen Kemper. I recently retired from the Department of Public Health Sciences at Clemson University, 2023, joined the Emeritus College and worked with the Emeritus College in a variety of ways, but

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Victoria Musheff: especially lovingly as a Faculty Senate liaison.

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Victoria Musheff: And, with the Wellbeing Committee, where we've been working on some health topics. So.

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Victoria Musheff: As far as my background, I…

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Victoria Musheff: tend to never claim to be an expert in anything, but I know a little bit about a lot of things. But I have a pretty consistent background working in health promotion.

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Victoria Musheff: Through hospital systems as well as, through community health promotion projects and research projects.

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Victoria Musheff: I was, my emphasis area is in physical activity, promotion, obesity prevention, and especially now with fall prevention, which is kind of my current passion.

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Victoria Musheff: I also live with a chronic illness that, for the past 30-some-odd years, that has helped me develop some expertise in patient advocacy, so…

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Victoria Musheff: Just to kind of give you a little foundation, I co-authored a book with a great friend of mine who's also a Clemson retiree, Linda Crewe McNamara.

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Victoria Musheff: The book is titled, If You Have to Wear an Ugly Dress, Learn to Accessorize, and it's a book that is designed to help

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Victoria Musheff: folks provide some, you know, inspiration and guidance for people living with autoimmune diseases like lupus, which is what my friend Linda has, and scleroderma, which is what I live with. And from that, I've been involved with a variety of other organizations. It's helped me build some

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Victoria Musheff: expertise, I'd say, with, being a patient advocate for myself, and also talking to others.

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Victoria Musheff: So, in particular, I've worked with the National Scleroderma Foundation as a leader for our state chapter since 2010, and I also am a member of the South Carolina Rare Disease Advisory Council

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Victoria Musheff: And I'm on the board for the Scleroderma, Stephan Scleroderma Foundation, which does a lot of work with

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Victoria Musheff: Providing education to healthcare providers, students, and bringing patients to talk to those students, and kind of set the tone for patient advocacy and teaching them a little bit about what they do.

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Victoria Musheff: A lot of my work has been in community health promotion, and right now, fall prevention is what I've worked… working on a lot, and feel, very passionate about.

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Victoria Musheff: people getting the information that they need to ask for what they need with their healthcare providers. So, I'm going to leave it at that. Might not be as pretty as what you prepared for me, but…

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Victoria Musheff: I'm going to turn it over to Debbie, let you highlight your expertise.

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Victoria Musheff: And first, for those of you who can see it, I have a copy of Karen's book here, and it is a delightful read.

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Victoria Musheff: And we have a couple copies in America's column, if anyone's interested. Okay, and I'll just pass that around. Again, I'm so cute, I forgot them.

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Victoria Musheff: Yeah. Okay.

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Victoria Musheff: So, many of y'all, or most of you know me because I'm director of the Nearness College, and most of you know I'm a nurse, but what you don't know is

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Victoria Musheff: maybe what I've done… Vince always says I don't say quite a note about it, but the reason I'm here today is because I have had

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Victoria Musheff: a long career in the health profession, and so I have worked as a staff nurse, a head nurse, a director of a non-degree nursing specialty program.

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Victoria Musheff: I've been a clinical associate in the Department of Surgery at Emory. I was a tenured faculty member in the School of Nursing there.

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Victoria Musheff: And I've had a variety of national positions, including, but not limited to, membership on the National Institutes of Health, National Digestive Disease Advisory Board.

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Victoria Musheff: Well, that's a presidential appointment, and I served a four-year period there. Also with NIH, I work with the Digestive Disease Education Information Clearinghouse and the Division of Cancer Control and Health Rehabilitation Oncology Nursing Project.

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Victoria Musheff: I was an evaluation program participant with that activity. I've also served on the board of directors for the Coalition of the Digestive Disease Organizations as a member of the American Cancer Society National Prevention and Treatment Advisory Committee on Colon Record Cancer.

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Victoria Musheff: I have 3 edited textbooks in nursing and multiple chapters and articles.

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Victoria Musheff: I've also developed degree programs for nursing and pediatric oncology, a health sciences program here at Clemson, and Health Administration, which was a joint degree with MUSC.

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Victoria Musheff: And I've had, collaboration with colleagues, including grants from NIH and from the Health and Human Services.

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Victoria Musheff: All of that has prepared me to talk a little bit about what you do when you're in the midst of a health system, and how to make good decisions within healthcare.

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Victoria Musheff: And just as an aside, for… in 1991, when I came to Clemson.

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Victoria Musheff: I was given, in the first month of being here, I was asked to write an article for the

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Victoria Musheff: Or, a health column at the College of Nursing at the time.

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Victoria Musheff: Dude,

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Victoria Musheff: on a monthly basis, I guess. Nobody else wanted to do it, so I wrote the first article. The next thing I know, I wrote an article twice a month for… until I retired in 2017.

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Victoria Musheff: And they were published in the Anderson paper. And Mrs. Garrison wrote an article on alternate Sundays on gardening. And I wrote mine on health sciences.

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Victoria Musheff: And nobody wanted it when I was stopping, so it went away, but I have had a great opportunity, over the years to really see changes in healthcare, some are great

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Victoria Musheff: Some are not so great. Some are complex, some are sort of simple. But today, we're going to put the slides up and we'll get started. Today, we want to talk a little bit about

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Victoria Musheff: The tips that might help you as an individual or as a caregiver to improve the way that you interact with the healthcare system to make better decisions for yourself.

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Victoria Musheff: So, Harris, I'm going to tell you a little bit about our goals. Would you pull the slides up, please? Oh, yes.

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Victoria Musheff: You're ready. Yes, ma'am.

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Victoria Musheff: Moses dope.

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Victoria Musheff: Alright, so for today, you know, we have limited time, and this is a huge topic, but we want to get some things started. So one of the goals is to start a conversation.

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Victoria Musheff: to get, get you to share, we're gonna share and get you to share some things about your experiences advocating for your own health. We learn from each other. So some of the tips we'd like to focus on for today is how to make, healthcare decisions.

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Victoria Musheff: give you some recommendations for how to do that. How to ask strategic questions.

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Victoria Musheff: Keeping your medical information organized, and then building a healthcare team and a social network that supports your positive health outcomes. We're going to touch on a little bit of that,

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Victoria Musheff: As we go through, but we really also want to engage you in some, feedback and experiences that you have, so we share ours.

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Victoria Musheff: And you're going to find that Karen and I wanted to make sure that we had a disclaimer. Yeah, so we are not experts in creating a healthcare team, or building a network, or organizing

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Victoria Musheff: health records. However, our experiences in working with healthcare providers and health systems, we know we can learn from each other. The other thing I want you to know is that I know you are all teachers and researchers.

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Victoria Musheff: And you know how to seek information. So we want to start with where you're from, not tell you something that you probably are already doing, but to look at ways that we can make it easier for you, and manage it better.

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Victoria Musheff: So, who are we? We gave you a little bit of information about our backgrounds, and we think that was really important, because we are researchers. We look at questions small and large. We want to know the details. When you… when Karen starts talking about scleroderma and living with it.

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Victoria Musheff: You'll know that she is not a novice in this area, that she has spent a lot of time looking for patterns, asking questions, understanding the limitations of technology.

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Victoria Musheff: And we are, both of us, experienced health educators. We spend a lot of time working with families and individuals and living with their chronic illnesses.

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Victoria Musheff: So we're going to kick it off by talking about making health decisions. Everybody's had to make health decisions. Sometimes they were not of great consequence, sometimes they were of great consequence. We're going to highlight 3 things.

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Victoria Musheff: that may be helpful to you in going forward and in the future, making health decisions. Hopefully some validate things you've already done, and also maybe some will give you,

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Victoria Musheff: some insight into how you might make better decisions going forward. And I do want to emphasize, you know, in health promotion and behavior change, we know knowledge is necessary, but not sufficient for change.

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Victoria Musheff: It involves also skill. So getting the information, that is itself a skill, but also applying the information is a skill. So it's not just enough to know something, it's know how to use it. So…

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Victoria Musheff: We'll take a look first at this concept called pause, and actually we talk about… my… Linda and I talk about this in our book,

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Victoria Musheff: this is really, kind of a cornerstone for thinking when you live with something chronic. So, pause, assess, and choose. That's a… that's a skill, that's a framework to adopt when you think about making some important health decisions, or maybe any life decision.

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Victoria Musheff: Especially if it's, if it's new, or scary, or intimidating. So, you gotta value the power of the pause. Pause. You get some news.

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Victoria Musheff: You don't have to make a decision right away. Give it… give yourself a minute. There's a lot that has to kind of process, and it's important to allow yourself to go… to have that pause to do assessment, but you don't want to get stuck in pause. If you get stuck in pause, you have made a choice.

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Victoria Musheff: It might not be the one you wanted, but the choice was to do nothing.

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Victoria Musheff: So, during the pause, you're gathering information. Knowledge is power. You do need to be able to apply it, and it can be overwhelming, so there's a… there's a tipping point. You kind of paralyze yourself with being overwhelmed by information.

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Victoria Musheff: Through that process, you're identifying your options.

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Victoria Musheff: And also do an inventory of how you're feeling about it.

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Victoria Musheff: Negative feelings should be treated as a kind of like a red flag.

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Victoria Musheff: what's behind that in… as far as that collection of information? Maybe it's… I'm not sure what this means, it seems like it's so complicated, there's no good choice, I joke around.

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Victoria Musheff: Oh, I guess I'll say it now.

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Victoria Musheff: that sometimes with chronic illness, you feel like, okay, I have my options. There's the crap option, the crappier option, and the crappiest option, and I'm trying to find the crap one. Which is, you know, so you can feel overwhelmed about that.

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Victoria Musheff: Then you're also weighing costs and benefit, and that… that's not always easy to do, but this is what you're doing during assessment in the pause. Then you make a choice.

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Victoria Musheff: And then you continue to evaluate how that choice is working, and if you need to, you know, pivot.

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Victoria Musheff: Forgiveness, this is our first time doing this,

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Victoria Musheff: Tagging! And we decided we wouldn't try to sit down because we were… One of the things when you're looking for information is, Vince has to always point out that I don't speak well, but I think I'm yelling because of my hearing aid.

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Victoria Musheff: So, when you think about reputable health information, you've got to find something that you trust. There are some science-based sources that you can use. Because of my work with the National Institutes of Health, I really feel like there… that's one place where you can go to get

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Victoria Musheff: a lot of information. They have… you wouldn't believe the number of patient handouts that are available, that you can search by topic, or by org body system. You just… it's unlimited, the amount of information they have.

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Victoria Musheff: All of it is this… and it's designed for categories of people. So you can read what they're telling doctors, you can read what they're telling nurses, and you can tell what… you can read what they're doing for consumers or patients.

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Victoria Musheff: So you've got all three of those sources in one place. The Centers of Excellence are usually disease-specific, but again, a website search. Kidney disease will bring up hundreds of things that you can then go and look at and study.

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Victoria Musheff: I also like to go to health systems that I trust, like the Mayo Clinic, or MD Anderson, or Duke, or Emory, or even Prisma, where they've got resources that they've designed for their patients.

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Victoria Musheff: And again, most of these sites will come up when you search a particular thing. So you've been diagnosed with

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Victoria Musheff: reflux disease. You can go… you can go to all of these sites and find something on reflux. You can go to all… your foot hurts, you've got muscle cramps. All of these places are going to have something that will do… that will tell you something about whatever it is you're suffering from.

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Victoria Musheff: There's also some open evidence places, and there's a website called OpenEvidence.com.

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Victoria Musheff: When I was in the hospital early on, and remember, I'm older, so…

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Victoria Musheff: 50 years ago. What I noticed is that all the medical students in their lab coats had a little book.

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Victoria Musheff: And they'd go in a patient's room, they'd do a little history, they'd come back out, they'd sit down at the desk, and they'd look through this little book. It was a little guidebook on what, you know, what do you do with this group of symptoms? What does it lead to? Open source is the website of that book.

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Victoria Musheff: But everybody has something that they're using to try to help them put together a pattern based upon symptomology, or blood work, or whatever the physical findings are.

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Victoria Musheff: MedlinePlus.gov is another library of medicine, where, again, you've got lots of consumer-related health information. But there are also experiential sources that you want to look at. Most websites, will provide the same information

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Victoria Musheff: based on published standards. So everybody has what they consider

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Victoria Musheff: critical standards of care for any diagnosis. That's usually what Medicare or an insurance company will pay for.

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Victoria Musheff: And so, when NIH says that they're changing their standard.

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Victoria Musheff: you've got to look at what the impact of that is as it moves down. So, for example, this week, they published a report where,

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Victoria Musheff: they are recommending mammograms be done… not be done after the age of 74, that you don't need an annual mammogram. So what's the implication of not having an annual mammogram? And so you need to read all the sources about that information. Now, everybody agrees with their decision.

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Victoria Musheff: If you go to the American Cancer Society, or you look at some of the… some of the groups that deal particularly with breast cancer, they will say, well, maybe that's not such a good idea. Maybe you don't want to just…

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Victoria Musheff: So that's the way you get to ask those questions. So, you can look at support groups. Almost every chronic illness has a support group, and almost all these support groups are around us, so that you could find one to go to.

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Victoria Musheff: Support groups do different… Karen and I were laughing about this yesterday. Support groups for women.

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Victoria Musheff: And support groups that involve men.

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Victoria Musheff: Don't function the same.

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Victoria Musheff: So, I was with the… I worked in the VA hospital for a while, and we had a support group that met monthly, and the men came in, and if they brought their wife, there was a lot of conversation. If it was just the men, they didn't really talk, they wanted someone to talk at them.

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Victoria Musheff: And they kept quiet about it. And you had to get them almost in a one-on-one, and then they would talk, but if there were… there were women in the room, then they… they closed up a little bit. So, women go in, and they just… they chat a

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Victoria Musheff: And it's good. They chat about a lot of stuff, they share a lot of information. YouTube videos are wonderful.

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Victoria Musheff: I can… an example of a great YouTube video was, I'll get rid of hip surgery, so I watched a film of the surgery.

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Victoria Musheff: In fact, I watched a couple of them. Most of you would not want to do that. I thought it was very informative. I found the best video where the doctors talk about how do you end up with your legs equal distance?

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Victoria Musheff: The doctor that uses the right kind of surgical band.

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Victoria Musheff: knows that your feet are going to be equal when he finishes your surgery. The one who estimates it may give you a little bit of a limb. So, those are the kinds of things that you can figure out and find out by looking at things.

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Victoria Musheff: I will caution you about AI.

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Victoria Musheff: AI is a great way to find lots of information. What you will find, if you keep asking AI the same question, is it will repeat the information, and it will repeat the sources over and over again. It does it quicker.

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Victoria Musheff: But we also know from our librarian friends that AI, if you keep asking the question a different way, sometimes that would invent or hallucinate a response.

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Victoria Musheff: And it will not be… so the…

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Victoria Musheff: And I thought as if I was judging some posters, or,

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Victoria Musheff: a nursing conference, where I went to look at the references and looked them up. Well, the author's real.

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Victoria Musheff: The journal's real, it's just there is no publication of that name in that journal. But AI… but it's… so it was AI-generated, so you've just gotta go to the… all of us as researchers know you go to the original source. Isn't that what they always taught us in school? You find a reference, you go to the original source, so if it tells you there's something in the journal.

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Victoria Musheff: The American Association of…

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Victoria Musheff: plastic surgeons. You go to that journal and wrote that article. We all have access to the library at Clemson, where we can get into almost every journal. So there's no reason for you not to go look it up.

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Victoria Musheff: So, to build on that point, you really have to be… have a critical eye, just like when we did our work in research or any kind of investigation. On the previous slide, the open evidence one…

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Victoria Musheff: caveat to me that shows that that would be a more trusted source than some AI searches is that it's drawing off publications

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Victoria Musheff: Vetted and through, you know, published things

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Victoria Musheff: embedded to the New England Journal of Medicine.

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Victoria Musheff: So physicians are using it to expedite and help them,

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Victoria Musheff: better understand what a cluster of symptoms might be pointing towards terms of a diagnosis, etc. And I think, you know, speaking is

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Victoria Musheff: from the perspective of a rare disease, where maybe a diagnosis is difficult, I think this can be really helpful in partnership with your physician. I believe that's the website they would be using more than just general chat GTP, hopefully.

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Victoria Musheff: I mean, you… but you have to have a critical eye, to look at the information, so think about who's giving, the provider who's providing that information, who's the source.

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Victoria Musheff: how they're funded. If they're funded through sales, be a little skeptical. They have an ulterior motive. That doesn't mean you can't find useful things there, but be skeptical. The quality of the information, where's it coming from? You know, check the sources. Who are they relying on? And then also.

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Victoria Musheff: how are they using the information? If you are accessing that system, are they collecting information off of you? Is this really a marketing strategy to perpetuate sales, or to put you in the algorithm to…

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Victoria Musheff: kind of be in touch with you for the rest of your life, which is really… seems to be the norm. So, MedlinePlus has a tutorial, we have a link up here, where you can just kind of walk through and

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Victoria Musheff: and refresh your memory, because I think a lot of you know how to do this, but it's a good way to refresh your memory, just like when we do the cybersecurity trainings.

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Victoria Musheff: you may have a sense, like, I need to be careful of scams, but going through a tutorial helps you

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Victoria Musheff: kind of keep your skills sharp in being discerning, because

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Victoria Musheff: When you're not well, you're very vulnerable.

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Victoria Musheff: Vulnerable until somebody says they have the answer for you, or this, if you just buy this thing.

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Victoria Musheff: This is a miracle cure, or they won't tell you that this is a miracle cure, but it is. You're very vulnerable, especially if you're not having an easy time getting answers you need. There's a desperation that we can have, wanting to be told the answer, to be saved, to be cured, to have pain related.

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Victoria Musheff: Okay, getting a second opinion. Now, that's part of that information processing. You kept collecting information, you're assessing.

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Victoria Musheff: Pros and cons to getting a second opinion. I'm sure you all have some experiences with that. That would be interesting to see, you know.

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Victoria Musheff: How… what your, success was.

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Victoria Musheff: It can be very valuable in helping you confirm something, clarify something, or if you're… you're not feeling… or if you think, I need somebody maybe with more expertise, that's also where going back to those

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Victoria Musheff: Foundations and organizations, even the support groups, maybe where you find out about

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Victoria Musheff: a healthcare provider with expertise in the area you need, you might want to get a second opinion with it. They may not be the one delivering care, but you may want them to bring expertise back to your regular provider so that you have

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Victoria Musheff: More informed… Decision-making going on.

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Victoria Musheff: But it also means challenges of appointments, getting approval with insurance, more time. It can be emotionally stressful, especially… let's say you get…

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Victoria Musheff: the second opinion conflicts with the first one. Now you… now you have some new things to make decisions about. Hopefully your healthcare provider won't be…

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Victoria Musheff: feel challenged by it, but it could create some strain as well, but hopefully they won't. I think that will all depend on how you communicate with them. So communication will be critical.

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Victoria Musheff: To help them understand this is not an affront, to their expertise, but that it's your need. And so, ultimately, it's up to you.

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Victoria Musheff: There are some links here as well that talk a little bit more about getting a second opinion, and, tips for, going through the process of,

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Victoria Musheff: You know, making sure your insurance company will pay, or what… knowing what your options are for that.

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Victoria Musheff: And there's a checklist, I believe.

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Victoria Musheff: That… I won't go through all these details, because it's like a two-page document, but this link is great, and it's going to help you think through, do… should I get a second opinion? Even if you're thinking about it, it probably means this might be helpful to you to feel better about your decision.

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Victoria Musheff: Even if it's just a confirmation.

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Victoria Musheff: The process of doing that, there are a lot of strategies, talking to your own physician, talking to your networks.

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Victoria Musheff: I also would recommend, especially if you have a certain condition, if there is a foundation.

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Victoria Musheff: That is, kind of works to advocate for that condition. They'll often have a list of experts around the country.

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Victoria Musheff: That you may want to seek out, and they will have a list, and those centers of excellence often focus on… these areas around the country have a collection of healthcare providers that have expertise in this area, so it might give you that

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Victoria Musheff: all their place to get information. And then, of course, you have to understand what you need to do to make sure that this will be covered by your insurance and how that will work. Want to make sure you follow the process.

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Victoria Musheff: Doing all the pre-approvals and… Getting your healthcare provider to work with you on that.

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Victoria Musheff: And I'd just like to make one additional comment on those questions, on the notion of selecting this second opinion.

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Victoria Musheff: if you… you have to have a good relationship with whomever you're going to be working with. So, if there's not a good click.

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Victoria Musheff: If you don't feel the person's listening to you, or is willing to hear you, or pay attention to your needs, that maybe you need a second opinion

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Victoria Musheff: Because you need a second doctor that is going to be more attuned to you and you're comfortable with. And there's nothing wrong with not liking someone. You just, you know, sometimes you just…

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Victoria Musheff: Don't. Yeah. They may be a great technician, and they may… and you may want them to do the surgery because you're not awake when you're having surgery, but at the end of the day, you need someone that you can really communicate with. Yes, yeah.

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Victoria Musheff: So, I'll say, early on in my experience with my disease, the first doctor told me, and my symptoms were very generic, swollen hands and an ulcer on my hands.

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Victoria Musheff: We're never gonna know why your hands are swollen, and it's just a vanity problem.

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Victoria Musheff: well, of course, he was fired. He had to move on. Well, you don't even argue this, like, next, and just, do I have to write a check for this? So,

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Victoria Musheff: So we talked about making decisions, and now, you know, we want to focus a little bit on getting, quality healthcare. So the couple areas that we're going to touch on with this. So we're going to look at

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Victoria Musheff: Maximizing each visit. I mean, you only get a few minutes, right? You need to maximize your time.

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Victoria Musheff: Have strategic questions that are kind of always part of your repertoire.

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Victoria Musheff: Learn as much as you can.

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Victoria Musheff: about medication and treatments, and your disease, too, but the medications and treatments, these are things where you've got to be made. You don't really get to decide if you have a disease, but you do decide on what kind of approaches you'll do to manage it… use to manage it. Keeping good records and building a support network.

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Victoria Musheff: So, I'm gonna see if we're on track with our list here. Now.

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Victoria Musheff: How do you prepare for appointments? Well, you know, I know all of you know some of the routines, you know, you have a list of questions, you do research.

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Victoria Musheff: But you really do need to make this… this is a skill. You need to be structured, you have your questions, you know, you've done research, you understand the terms.

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Victoria Musheff: That's not what you want to spend your time on.

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Victoria Musheff: with the doctor saying, well, what does that mean? You want to do that before you go, so that you can say, let's talk about options, let's talk about decision. What does this mean? I definitely think using your social networks to collect information about the decision you're going to make, especially

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Victoria Musheff: your social network in your area. Like, I know I attend a social… a support group monthly. We talk about what we're going through, drugs we're using, what's working, not working. We see the range, that everybody's a little different, but it can also be very validating, and it helps you know, I need to ask about this.

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Victoria Musheff: Also, before your appointments, you need to know, think, is this an appointment where I need somebody to come with me?

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Victoria Musheff: Is there gonna… is this a place where I need somebody to be my note-taker?

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Victoria Musheff: Not every visit requires somebody to come with you.

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Victoria Musheff: Not every friend is somebody or family member is the person who needs to be in the room with you. Like, you may not be able… sometimes maybe they can't handle it, they may not be your best advocate.

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Victoria Musheff: Probably, personally, I always want to bring a friend who may be a nurse.

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Victoria Musheff: Somebody who has a different ear, right? They're there to take notes, and then they can talk with me afterwards. So, these are things to do before you even go to the appointment. And if you're doing a lot of appointments, then you probably kind of have your little system worked out. It's not as hard, you know.

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Victoria Musheff: Build it once, use it many times. So, how are you going to communicate with your healthcare provider? So, we have some bullets up here. You do need to get… you do need to get comfortable communicating before, during, and after.

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Victoria Musheff: you've got the benefit of something like MyChart. This is where you can get some things clarified. It may not be in the appointment, but you need more information in either they, the healthcare provider, or their

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Victoria Musheff: Team member will help you with that.

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Victoria Musheff: You also need to confirm, and document all the next steps. So you're in your appointment. I personally use a notebook, and I'm on my third volume, where I take notes of every single appointment I go to with all of my healthcare providers.

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Victoria Musheff: But I confirm here. Now, look, let me understand what we've said here. So, there's a strategy called Teach Back, where the healthcare provider uses Teach Back to say to the patient, now, let's make sure you understand, let's make sure we have an understanding what to do. I think we need to also reverse that and say.

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Victoria Musheff: Now, is this what I'm understanding me saying you want me to do? So, I wouldn't wait for them to ask me. I would be having my bullets written out, and when I say document, you have the thing in the notes, and you say, yes, this is what they said? Yeah, Vince, do you have a question? I was going to ask you, do you find the doctors are correct about when you taking notes like that?

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Victoria Musheff: No. And are they uncomfortable? Are they… They probably get meaded out, yeah. They appreciate it, perhaps, that you're really paying attention. I, I think so.

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Victoria Musheff: I…

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Victoria Musheff: if somebody was, and I had actually one doctor when I was talking about, you know, the change in the,

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Victoria Musheff: the climate where patients have more information, they're coming to them. Unfortunately, he didn't stay in my team.

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Victoria Musheff: For a variety of reasons. But when I was asking about that information and how he was… thought about it, he said, well, why do you need me if you've got all that? And I thought, oh, that's too bad. I do need you, but not you. Because…

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Victoria Musheff: I do need somebody who's gonna be okay with me coming in a form. And frankly, when you're living with a chronic illness.

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Victoria Musheff: not everybody approaches this way, but I think I'm the one with the steering wheel.

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Victoria Musheff: Because I'm gonna have to navigate across a lot of different providers.

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Victoria Musheff: So, if they get intimidated, it might not be a good… Not a good fit. Yeah, maybe you need to date somebody else to move on. Not a long-termer. But documenting everything, because you… it is a little overwhelming. You only have a few minutes, and it also helps me

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Victoria Musheff: Having decades of dealing with this.

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Victoria Musheff: I can't remember what happened last year. I can go back to those notes, it helps me a lot. That just works for me.

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Victoria Musheff: You should have an inventory of common questions. We've listed some here. These are things that should be commonly on the list to be asked. It's not rocket science, but they need to be part of the repertoire. You may not need to ask all of these for every visit, but this should be your little go-to list.

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Victoria Musheff: And then I also believe it's really important

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Victoria Musheff: To get skilled at asking for a minute.

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Victoria Musheff: for a health decision. Rarely does it have to be made immediately, and I… find that myself. I… I'm…

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Victoria Musheff: find that sometimes I may say yes, okay, let's do this, and then when I've had a minute away, I say, wait, I'm not ready. I still have more questions.

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Victoria Musheff: You should get in the habit of saying.

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Victoria Musheff: I hear what you're saying, I want to do a little bit of work on this, I'm going to make a decision at the next visit, right? But you have that right, unless you just know exactly what you want to do. Yes, let's go for it. But with big, new things, give yourself a minute. You don't have to respond right away.

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Victoria Musheff: Yes, you live with all the choices.

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Victoria Musheff: You're the one. That's right. So, and this is where Karen and I differ based on our background. So, I am much more likely to make a decision then, because I probably made a decision before I went in the room.

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Victoria Musheff: Because I've already read a lot of stuff about it, and I also worked in medicine, and I worked in surgery. Surgery's so nice, you cut it out and it's gone.

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Victoria Musheff: Medicines, you're having to… It's a lifetime decision? Yeah, it's a lifetime thing, and you've got to juggle it much more differently. So, if you've got a problem that's going to be treated chronically for a long period of time, then you've got to deal with it differently than if you have something that can just be fixed.

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Victoria Musheff: So…

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Victoria Musheff: And I think that's where you and your doctor know whether there's a fix or not a fix. This is a fix for.

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Victoria Musheff: You know, and this is the consequences of that fix. You've got to know what the consequences are, so there are lots of series of questions, but at the end of that little diagram, you can…

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Victoria Musheff: you can take that moment to pause and think about, do I want that fix? Do I want to have that surgery? Do I have… it's… somebody told me the other day that they decided that they were going to move when they moved because they knew they could move and manage and move.

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Victoria Musheff: at their age, but if they waited 5 years, they weren't sure they could. And they wanted to do it while they still could. And so that's the question that you begin to ask yourself. Now, I want to mention the American Geriatric Society's VEERS criteria.

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Victoria Musheff: And the reason for this is that there are 93% of older people who have falls are on at least one medication.

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Victoria Musheff: that falls.

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Victoria Musheff: Or fog, or dizziness, or whatever is a side effect.

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Victoria Musheff: And so, sometimes we're not aging, it's not our age. It's the combination of medicines that we've been put on over 40 years.

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Victoria Musheff: So, you have a symptom, and the doctor gives you a prescription for the symptom, but the symptom causes a problem, a side effect, and he gives you a different prescription for that side effect.

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Victoria Musheff: The BEERS criteria is, say, take a look at that.

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Victoria Musheff: There's a list on this website that's listed below.

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Victoria Musheff: There's a list of medications that most older adults should avoid.

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Victoria Musheff: Okay, so I'm going to give you an example. Dramamine.

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Victoria Musheff: We know… Vincent, I know someone who took Dramamine like they wore mints.

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Victoria Musheff: And… because she got card sickness. And she just thought one derivating after another, and thought nothing of it. And when she was 20, that didn't cause a problem. At 70,

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Victoria Musheff: She passed out in a restaurant with us, and we didn't know that she was eating Dramamine like they were mints, until we got into the emergency room, and they let me go back because I was a nurse, and I was helping her undress, and a handful of white things fell on the floor.

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Victoria Musheff: And I picked them up, and they were Dremlin, and she'd been taking them And it's aging.

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Victoria Musheff: as we got older, as she got older, her body could not metabolize that as well as it did when she was 20, or 30, or 40. It's at 70. So, luckily, she did fine, the doctors were able to get her stabilized, but there's certain medications that, you know, we just need to avoid. There are other medications that

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Victoria Musheff: You can't not take it. You've got to take it, but you need to know what you're doing.

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Victoria Musheff: But there is a de-prescribing

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Victoria Musheff: process that you can use. So if you're on a lot of medications, you sit down with your doctor with a list of everything you're taking, including over-the-counter medication, and you say, which of these do I still need?

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Victoria Musheff: And then you slowly, one at a time.

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Victoria Musheff: reduce the amount that you're taking. It may be the

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Victoria Musheff: amount you're taking. You may go from 40 milligrams to 20 milligrams. You may go down to 10 milligrams, then you may go every other day, then it may be every third day, and eventually you may be able to wean off a particular medication.

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Victoria Musheff: And if you can wean off of it, great. If you cannot, he's gonna tell you, you can't not take this medicine.

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Victoria Musheff: But I think that… that's something you just need to think about. You see it a lot, because people will come in, and they have a handful

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Victoria Musheff: of things that they take every day. And the question becomes, do they still need it?

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Victoria Musheff: And then, so, know everything that you can know about your medication.

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Victoria Musheff: I know we've had a problem that Ruthan Pruitt did on a program that Ruthan Pruitt did not too long ago on medications. You can go back and take a look at that program. It should be under our past program list. But know the side effects. Understand the interactions, the timing.

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Victoria Musheff: If it's for symptom management, is there an alternative that is a non-drug alternative? And then talk to your doctor, particularly if you're taking sleeping pills, anti-anxiety medications, anticholinergics, acid-reducing meds.

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Victoria Musheff: and your non-steroidal anti-inflammatories, and there are all kind of research questions going on right now about statins. Does everybody need a statin?

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Victoria Musheff: And… That's a discussion with your physician, or your team as we get there.

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Victoria Musheff: Yeah, the whole polypharmacy… situation, is… is challenging. You may have to…

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Victoria Musheff: May not be able to go off a drone, so then you've got to be…

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Victoria Musheff: More mindful of… Fall risk management.

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Victoria Musheff: And so, if you do have dizziness with certain things, then you really need to be more mindful of how you might alter your routine to decrease that risk, or alter habits. I'm on a medication that makes me dizzy.

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Victoria Musheff: And I just… I can't take that medicine. But I…

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Victoria Musheff: am careful, because I know because of how my body will react with certain, movements, that I just have to be careful. I have to behave differently.

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Victoria Musheff: Now, keeping copies of your records.

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Victoria Musheff: We said in the beginning, disclaimer, like, we're not experts in this, only experience.

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Victoria Musheff: And… The… what works for one person won't work for another, but… You really, can…

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Victoria Musheff: optimize your healthcare if you have a habit of keeping your records in a way that make them useful to you in your appointments. So.

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Victoria Musheff: Part of that is deciding what you need to keep regularly, how you want to store it,

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Victoria Musheff: Personally, I… I mentioned earlier, I have a journal, I write down every appointment, it's like the old-fashioned way, you know, that works for me.

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Victoria Musheff: But I also have a spreadsheet of certain data points that I follow over time, so that when I go to one doctor, I can… we can look at that in perspective of time.

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Victoria Musheff: you have a right to have access to your medical records, so you might have my chart, but not every

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Victoria Musheff: healthcare provider may use that system, or you might not have access to maybe the whole complete file, or you need to be able to take it to another person. So, you want to learn, how to optimize your access to that, and learn how to get what you need. Getting a second opinion might require you be making

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Victoria Musheff: medical records available to that other, provider. So…

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Victoria Musheff: That's a little bit of work and a learning curve for the technology you have to get familiar with.

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Victoria Musheff: You have to decide how you want to collect, collate, store, have available your

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Victoria Musheff: health record information, whether that's a combination of paper and electronic, or what have you. But get organized. And I know, periodically, I go back through my files, and I know I can throw some things away, things I thought maybe I need to keep, but just by cleaning it out, it makes it more…

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Victoria Musheff: useful to me. It's full of a bunch of clutter, it's not actually that useful. So think about how you would keep information, especially if you're managing some aspect of your condition. I keep research articles in my file.

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Victoria Musheff: It helps me argue for my choices with my healthcare provider, allows me to ask questions. So I see in this large study, longitudinal study, the people who did best.

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Victoria Musheff: had these situations. How can I make sure I have these things in place for this thing I'm going to deal with?

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Victoria Musheff: There's also an interest… there are a variety of apps

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Victoria Musheff: out there, I became familiar with this Folia Health app. It's an app that tracks symptoms.

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Victoria Musheff: If you're living with a chronic problem, and you're trying to maybe see how you're responding to a treatment, these apps can be helpful in allowing you to track

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Victoria Musheff: those things in your… using your phone, and it could be, like, day-to-day tracking that makes it easier to do that and provide that information back to your healthcare provider.

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Victoria Musheff: I'm not saying you should use this app, it's just an example of how you might have something help you

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Victoria Musheff: bring your information together or track it easily so that you see how you're dealing with a medication or a treatment.

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Victoria Musheff: They also allow you to participate in studies where they can use your information with certain chronic illnesses particularly, to tailor those apps to collect the information in the ways useful for you. So lupus is one of the examples that they have, so it helps them.

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Victoria Musheff: keeping a systematic, collection of information for you is going to simplify things. I also forget

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Victoria Musheff: So, I mean, we're at the age where it's not like, oh yeah, I've been…

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Victoria Musheff: I've had this thing for 5 years, we're talking about now 20 years, 30 years, you can't remember everything.

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Victoria Musheff: And, you know, I would add to that, my chart is wonderful, and some of the other ones are too, because they will allow you to track your blood work. Yes. And you can actually put it in graph form.

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Victoria Musheff: So that you can pull up and you can tell it how long you want it to track it. So you can look at 2 or 3 years of a particular blood level. Yeah. So, if you're… if you're thinking about how well you're doing in a particular area.

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Victoria Musheff: We know this is with diabetes, people are working at their A12 levels. Yeah. And so, as they look at that, they can track that blood work over time.

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Victoria Musheff: with simply going to my chart and saying, you know, I want to see a bar graph, or I want to see a

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Victoria Musheff: flowchart, or whatever you… whatever you're most comfortable with, but you can see those values in that graph format, which is much more helpful to me than going back… flipping over pages and saying, well, it was, you know, 7 here and 12 there, and… That's why I use an Excel spreadsheet.

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Victoria Musheff: I want to see all of my measures together, and that you can't easily do with live chart, or across healthcare providers. Particularly across healthcare providers, as you're doing the new, yeah. So, we talked about giving documents, now building a network that supports your health.

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Victoria Musheff: So we know that People live within a system of influencing factors.

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Victoria Musheff: The public health nerd in me has to have the, you know.

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Victoria Musheff: ecological model up here, where there's the individual, and that individual's health choices and outcomes are influenced by a lot of things. It's not just their own individual behavior, but it's influenced by a variety of things. And in this case, when we think about a network, it's those interpersonal relationships

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Victoria Musheff: That, provide support, but also information.

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Victoria Musheff: And I want you to think, like, in your network.

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Victoria Musheff: It's not just the people close to you in the network. The peripheral people can be really valuable to bring you new information.

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Victoria Musheff: Because you're reaching into their networks.

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Victoria Musheff: And that information can come from their bigger networks through to you, like a just giant nervous system.

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Victoria Musheff: But you can get a lot of…

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Victoria Musheff: a lot of things are going to influence the impact on your health through that network, so it could be through social support.

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Victoria Musheff: Social influence, we mean, like, what the norms are within your network. Do they support healthy behaviors? Do they support not-so-healthy behaviors?

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Victoria Musheff: Of course, it can provide engagement. We know loneliness is a tremendous factor, for poor health outcomes. As we get older, that might become an increasing risk as maybe our network shrinks or shifts. So it's a kind of a…

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Victoria Musheff: an incentive to… Nurture your network to keep it from shrinking, if you can, however that works for you.

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Victoria Musheff: You may also have access to resources, which could be information, but also

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Victoria Musheff: Any of us who's had us

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Victoria Musheff: To help take care of an older parent, or a sick sibling.

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Victoria Musheff: knows that

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Victoria Musheff: or at least my experience was, my network was what allowed me to help take care of that person better than if I didn't have that network from

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Victoria Musheff: telling me who were, you know, what resources were available that could support me, or they chipped in and helped me get somebody somewhere, or stayed with somebody, etc. So that network is important for you to invest in for your health outcomes. We know that it makes a difference. Now, your network can have

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Victoria Musheff: negative implications, too. Your network is one that is exposing you to negative things, you may want to prove. You want to approve and make some changes to that network, because it's counterproductive.

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Victoria Musheff: But building that network helps with advocacy. I can't say enough about how important the support group that I attend regularly

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Victoria Musheff: It has… it amplifies my ability.

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Victoria Musheff: to, one, validate what I might be experiencing, give me more information, and also builds your confidence

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Victoria Musheff: to navigate some of the things you might have to navigate. You hear their experiences. Now, you have to be careful with some of the social support groups. Some of them may not be as,

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Victoria Musheff: well-balanced as others. They may not have people trained to run them and facilitate healthy interactions with folks, so be careful about that. I think

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Victoria Musheff: INSPIRE is a internet support group network that crosses over lots of different diseases. I think they do a good job giving you access to

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Victoria Musheff: Information and support if you need it.

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Victoria Musheff: Yes, so… now. Luca's gonna talk about this a little bit.

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Victoria Musheff: You want to consider if technology can help extend your support.

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Victoria Musheff: Either the support you give to somebody, or the support you get. This might seem a little intimidating, and we're not used to this as much, but if you have cameras.

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Victoria Musheff: in your home, or if you have devices that allow you to communicate if you're not able to get to your phone, or you've fallen, or even the Alexa-type devices where there's intercommunication.

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Victoria Musheff: Though you may not want it now.

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Victoria Musheff: These might be things that allow you to stay connected to your network.

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Victoria Musheff: and still be independent, maybe, in your home. And I'll just give an example of a friend of mine whose father

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Victoria Musheff: Still lived in a, like, an independent living place.

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Victoria Musheff: But was starting to have trouble, so he's by himself, not having care coming in regularly. They were in the facility, but not on a daily.

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Victoria Musheff: She put a camera in his… apartment.

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Victoria Musheff: In two places, in his living room, so it didn't invade his privacy.

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Victoria Musheff: And over the, medication dispenser she leased for him, camera there, and she was, one, able to make sure he got his medication in the right way and proper doses.

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Victoria Musheff: And…

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Victoria Musheff: with the camera, when he came up to get his medicine, she had, like, an Alexa there saying, hey, Dad.

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Victoria Musheff: But, you know, he was timed, like, I'm supposed to get my medication out. She would say, hey dad, so she was reinforcing it. She could see him. How's… how's your morning going? How's everything going?

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Victoria Musheff: He also fell out of a chair, at one point, and nobody

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Victoria Musheff: Was going to be aware of that for a long time, but because of her camera, she could see he was on the floor and could contact help.

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Victoria Musheff: That may feel a little invasive,

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Victoria Musheff: However, it might extend your support in a way that allows you to stay independent. So you might want to think about that. I even think about cameras as far as,

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Victoria Musheff: safety, or, you know, if I'm out working in the yard.

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Victoria Musheff: You know, how's anybody gonna know you're there for… after a week? And I would say, I… I used to, so, my hearing aids have fall alerts on them.

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Victoria Musheff: And so, if I fall, I can have someone notified that there's a fall. The problem with it was it went off all the time.

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Victoria Musheff: Even when I hadn't thought the technology. The technology was a little wonky. But it's there, and it's available, and if I were living by myself, it would probably be utterly important to turn on.

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Victoria Musheff: There are also things that I used to not, when I'd go out for a walk, I wouldn't take my cell phone with me. I would just go for a walk. I didn't think about taking a cell phone.

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Victoria Musheff: Now, one of us should have our cell phones with us if we're walking, because we… if Vince… if I fell, Vince would be fine. He could pick me up and carry me home.

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Victoria Musheff: You've watched him let me fall. But if he fell, I could not carry him. And so, I know that I would need to be able to call 911 or call someone to come help.

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Victoria Musheff: I think that technology gives us the advantages of being able to be independent longer.

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Victoria Musheff: We have some cameras in our house, but they're focused on the birds.

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Victoria Musheff: They're focused on our memory. In other words, did we close the garage door? You know, halfway down the street? Did we remember that little button to push? Now we have cameras, and we can just say, oh yeah, they're closed. But I think we need to think about what technology offers us that also lets us extend the length of time that we have in our homes.

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Victoria Musheff: And it's there. It's there for us to use.

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Victoria Musheff: So, this is the last topic we'll touch on. We want to kind of let you have some… share some thoughts. So, you've got to build a trusted healthcare team. Everybody has

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Victoria Musheff: Has a… whether they call it a team, or a group, or just their doctors?

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Victoria Musheff: But… It's important to have a team that you really feel like you can count on and trust.

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Victoria Musheff: we're going to talk a little bit about this concept of interprofessional team, some features of a quality team, and then what some of them could look like, and I'm going to ask you to kind of think about what your team looks like, and where there might be gaps. So, to start out with.

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Victoria Musheff: Yes, there are… The massive list…

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Victoria Musheff: of doctors that you probably at least encountering along the way. Some of these are going to have a really big impact on your regular care, some more on periodic care.

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Victoria Musheff: And so, if you've got heart disease, you may see a cardiologist, you may see a thoracic surgeon, you may… there may be a number… there may be some other alternative people that need to be part of your team as well.

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Victoria Musheff: I wanted to point out a couple of people that I think are essential to have on your team. Early on.

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Victoria Musheff: If you don't know what to do or how to get help, the most important person you could speak to is a social worker.

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Victoria Musheff: And I will tell you, it is hard sometimes to find a social worker and connect with one. The easiest way is when you're in the hospital, that you connect in. They can help you.

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Victoria Musheff: solve problems. They know all the resources in the area. Now, Victoria spent a lot of time with our well-being committee and putting together a list of resources available in the Tri-County area

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Victoria Musheff: Anderson, Oconee, Pickens area, so that you could go to our website, you could get some links to some places, but the social worker is going to be able to address some of those issues.

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Victoria Musheff: So…

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Victoria Musheff: You've got someone who's showing signs of needing to be moved into assisted living or nursing home, but you don't know how to get them there, and you don't know what place to take them, and you don't know how to do it.

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Victoria Musheff: They can… they can help make sure, if you're hospitalized, that you don't leave the hospital until you're in a safe environment.

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Victoria Musheff: That means that there's someone that can care for you. So, if Vince needed physical care that I could not manage in the home.

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Victoria Musheff: they could help me put those pieces together that either, one, allowed me to be able to handle him in the home, or helped me find a place where he could be until he's able to manage himself. And I think those are things that are extremely important. The other is the occupational therapist.

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Victoria Musheff: I can tell you some funny stories about occupational therapists. Some of them are really very humorous.

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Victoria Musheff: But they also serve a role where, as you're losing critical function.

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Victoria Musheff: They can provide solutions. So, whether they're putting on a pair of shoes, where they've got, you know, you use a shoehorn, well, they've got a shoehorn. Y'all probably can't see my hands, but that's, you know.

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Victoria Musheff: 30 inches. 37 inches. It goes from my foot all the way up to my mid-thigh. And so, I can use that without bending over to put a shoe on.

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Victoria Musheff: I didn't know they made those. Or they've got… they've got numerous kinds of different kinds of wheelchairs that they can work with you, or braces, or whatever.

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Victoria Musheff: They can help you manage activities of daily life that make it easier. And so, those are the things that, you know, some of these other people are all about a particular part of your body.

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Victoria Musheff: And the problem is, is that if they don't talk together, so my urologist and nephrologist need to talk to each other, but they don't do the same thing for the… for the urinary tract.

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Victoria Musheff: One does surgery, one manages chronic disease.

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Victoria Musheff: But you need… but you may need both of them. You may have a gastroenterologist, who's gonna do one piece, but you may need a colon and a rectal surgeon at the same time. So you gotta… you gotta know how to pair these people up based upon what's going on with you.

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Victoria Musheff: Yeah. And how to talk to them. And I can tell you, that's the key, if you can get people that listen. Yeah. That's part of your team.

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Victoria Musheff: They don't necessarily like all of us either, because we do ask difficult questions.

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Victoria Musheff: Y'all could share some of your difficult questions. Yeah.

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Victoria Musheff: So, when… so… When we talk about interprofessional healthcare team, What that respects is that…

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Victoria Musheff: If you have some chronic conditions that you're managing, which tend to be an inevitable part of aging,

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Victoria Musheff: You are going to be…

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Victoria Musheff: Working with a variety of folks that may or may not be in the same health system, you communicate with each other. So you're really going to be thinking about how this team, how this group of care providers is going to work for you.

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Victoria Musheff: And they're providing services to you, and they're working with you, maybe your family, especially if that part of that team is, like, the social workers, not necessarily… necessarily direct care. They're supporting your care and well-being.

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Victoria Musheff: Technically, an interprofessional team is where you have at least two different disciplines working together, collaboratively.

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Victoria Musheff: with some shared goals for your health. Now, having a chronic illness, I know my, my team, my core team, we'll talk a little bit about the structure in a minute.

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Victoria Musheff: Is communicating well with

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Victoria Musheff: my peripheral care providers, because I'm in a center of excellence. So they work together and communicate naturally and easily, but that doesn't always happen, so you may have to facilitate

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Victoria Musheff: that communication, you might be the… you might be the conductor. And they're working together to support your total health. That's the ideal. I don't think that is necessarily how it all happens.

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Victoria Musheff: So if you look at, features of a good team, they need to, of course, they need to, address the needs that you have.

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Victoria Musheff: it needs to be able to evolve, and that's one of the things I could say is something we might not talk about a lot, is when we talk about life course, or our life continuum, what was working for you in your 40s and 50s may not be what's going to work for 60s and 70s. So, the team needs to evolve.

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Victoria Musheff: And the culture and the climate of that team needs to be one of respect.

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Victoria Musheff: An honoring of your right to make the decisions, that you're ultimately the one making the decisions.

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Victoria Musheff: And it's gonna be stable in that…

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Victoria Musheff: you're not seeing a different care provider every time you go in, in the management of whatever you're managing. That may not be something that many of us experience, but I do know lots of folks in my

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Victoria Musheff: scleroderma community, where they may be seeing a different doctor every time they go in. That's not going to be ideal for you to manage a long-term chronic problem. And they kind of have clearly defined roles.

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Victoria Musheff: That's a little abstract, but this is where we say, who's making ultimate decisions about blood, work, testing, are we communicating, or do we have

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Victoria Musheff: professionals kind of competing with different agendas where you're getting ping-ponged back and forth. So, clarify the goals.

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Victoria Musheff: Nope.

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Victoria Musheff: what can this look like? So, this is a publication from a textbook or a document for primary care providers, helping them think in terms of interprofessional teams, to prepare them to

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Victoria Musheff: naturally want to work across disciplines to support a patient's healthcare. So this particular graphic is an example of what a team might look like, an interprofessional team. And in purple, you see there's a core team.

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Victoria Musheff: And then in blue, an extended healthcare team, and then in orange, an extended community care team. If you'll go to the next slide.

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Victoria Musheff: I like to add to that, from my experience, that you also have this other, this fourth quadrant that supports well-being that may not fit into, you know, some of the clinical or clinical orientations of healthcare, but your core team is probably, for many people, is your primary care person.

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Victoria Musheff: For me, it's actually my rheumatologists, because we're working together the most, so we're the ones

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Victoria Musheff: meeting regularly. I don't see my primary care person as frequently as my rheumatologist, so to me, we're the core.

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01:05:59.010 --> 01:06:06.609
Victoria Musheff: I bring my primary care in, so they might be core, but they're kind of in my extended team. I don't really need them as much.

406
01:06:06.730 --> 01:06:10.170
Victoria Musheff: But your extended team might be all those other disciplines.

407
01:06:10.510 --> 01:06:30.209
Victoria Musheff: that come in periodically and provide some support. Then your community team is all the things out in the community that support your health. Now, depending on what you need, they might be social services, but it could also just be your spiritual community. It could be the YMCA, it could be…

408
01:06:30.300 --> 01:06:39.580
Victoria Musheff: The Emeritus College, she's supporting that, which I would actually put in the well-being category, because we're not really delivering health, quality health resources.

409
01:06:39.740 --> 01:06:44.959
Victoria Musheff: But that well-being team is also important because it's the other parts of your life.

410
01:06:45.080 --> 01:06:50.479
Victoria Musheff: that supports your health and wellness. So I wouldn't say taking an art class.

411
01:06:50.640 --> 01:07:03.190
Victoria Musheff: is healthcare, but it is well-being, so I think that's an important aspect to think that you need that as well to have a well-rounded person for yourself. Next slide.

412
01:07:03.880 --> 01:07:12.499
Victoria Musheff: Here's some general qualities to consider. I'm gonna go through those really quickly. That's… they sound… Probably pretty intuitive.

413
01:07:12.690 --> 01:07:26.939
Victoria Musheff: easier said than done, because teams are not always, naturally forming. You're not in a system that really has… is set up to do this intercommunication, but ideally.

414
01:07:27.140 --> 01:07:29.810
Victoria Musheff: You're working with a…

415
01:07:30.040 --> 01:07:45.409
Victoria Musheff: group of care providers that you feel respect you, and you respect them, that you feel you communicate well with each other, that you're getting what you need from them, and you're not always saying, you know, I go in here and I never get answers to my questions.

416
01:07:45.880 --> 01:07:48.419
Victoria Musheff: That's not getting your needs met.

417
01:07:48.530 --> 01:07:51.560
Victoria Musheff: And also stable, but adaptive.

418
01:07:53.000 --> 01:07:59.330
Victoria Musheff: Oh, yes! I think we do… oh, she's typing, so we can't move forward.

419
01:08:01.980 --> 01:08:07.530
Victoria Musheff: There you go. There you go. Back one, too. Back one? Yeah. Almost done.

420
01:08:08.970 --> 01:08:14.829
Victoria Musheff: -Oh. Okay, well, we will, reload that. Yeah, go back.

421
01:08:16.160 --> 01:08:18.149
Victoria Musheff: And… fair.

422
01:08:19.020 --> 01:08:29.409
Victoria Musheff: Once in a great while… Go all the way down. Yes, and then I'm gonna go all the way down to where you were. Or the hands, yeah. Yeah, that's good.

423
01:08:30.090 --> 01:08:44.050
Victoria Musheff: Yes, so there are… there are a lot of challenges with… with a team. I know everybody's experienced it. You may not have thought about it as, oh, challenge to my team, but you encounter challenges to getting what you needed done, and bumping in to things, like.

424
01:08:44.170 --> 01:08:52.609
Victoria Musheff: can't get what I need. So, you may not always be able to easily access expertise you need, either because it's not in the area.

425
01:08:52.859 --> 01:08:56.639
Victoria Musheff: Or your insurance, or…

426
01:08:56.950 --> 01:09:04.189
Victoria Musheff: whatever is a barrier. So sometimes you can't build the team exactly the way you want to.

427
01:09:04.310 --> 01:09:21.709
Victoria Musheff: some of those team members in those interprofessional areas, maybe they don't have insurance, they don't have insurance coverage, so you may need a dietitian, but maybe it's not covered for whatever reason, or you may need some other kind of support, and it's… it's not there.

428
01:09:22.100 --> 01:09:37.249
Victoria Musheff: providers are pressed for time. They don't always find it easy to be able to reach out to each other. I've been lucky, and my providers have been able to do that, but I know it's not always the case, so we can't just assume it's going to happen.

429
01:09:37.630 --> 01:09:42.519
Victoria Musheff: there's a little bit of crossover in who's in charge. I know I recently had a new

430
01:09:42.800 --> 01:09:44.680
Victoria Musheff: This person's had been a…

431
01:09:44.890 --> 01:09:55.650
Victoria Musheff: I'll just say a pulmonologist who came in, and I had this first visit with them, and it was like they were taking over. It looked like they grabbed the steering wheel from me, and I was like, no, no, no, no, no.

432
01:09:56.620 --> 01:10:07.070
Victoria Musheff: No, no, you're not… you're not doing that. I'm… I have the wheel, and we're gonna talk about it, and then I'll decide. So sometimes those roles have to be

433
01:10:07.290 --> 01:10:08.370
Victoria Musheff: hammered out.

434
01:10:09.110 --> 01:10:16.440
Victoria Musheff: And I would say a lot of people really say, I have a group of providers, and I manage things, they don't really operate as a team.

435
01:10:17.210 --> 01:10:18.750
Victoria Musheff: So, next slide.

436
01:10:19.000 --> 01:10:21.090
Victoria Musheff: So we're gonna ask you to think

437
01:10:21.550 --> 01:10:25.359
Victoria Musheff: Whoop, back up… what did we…

438
01:10:25.680 --> 01:10:38.399
Victoria Musheff: Can you take that out? Oh, yeah. So, here's what we're going to pose a question to you to think about, what does your team look like? You're thinking about your team, core… who's my core team? Who's my extended healthcare?

439
01:10:38.770 --> 01:10:43.089
Victoria Musheff: What's my community support like? Well-being support?

440
01:10:44.200 --> 01:10:50.829
Victoria Musheff: reflect on that a minute, and think, where do I maybe have gaps, or people that I would like to see that are not?

441
01:10:51.000 --> 01:10:53.189
Victoria Musheff: Or, I need a different person.

442
01:10:53.560 --> 01:11:03.909
Victoria Musheff: and not sure how to get them, like, if primary care is not necessarily easy to get a new person. People aren't taking new patients, especially when you go into Medicare.

443
01:11:04.130 --> 01:11:14.639
Victoria Musheff: What are barriers to those gaps? And then, could you say, could you rate highly that your teen has those attributes of a positive team?

444
01:11:15.240 --> 01:11:23.399
Victoria Musheff: I want to just put it out there to anybody, if we have… We do have somebody who has a question before we go. Dee, if you want to go ahead and ask your question now?

445
01:11:24.280 --> 01:11:28.199
Dee Stegelin: Sure. First of all, can you hear me?

446
01:11:28.790 --> 01:11:29.670
Victoria Musheff: Yes. Yes.

447
01:11:29.670 --> 01:11:34.699
Dee Stegelin: Okay. I really appreciate this session, because I think you, you really…

448
01:11:34.830 --> 01:11:47.309
Dee Stegelin: empower people and make them realize that they have a voice in their own care. And I think it's easy to be intimidated, I think, in the medical field.

449
01:11:47.370 --> 01:11:58.610
Dee Stegelin: But I… I just had a couple of comments, one related to your… your use of YouTube, and this is…

450
01:11:59.290 --> 01:12:11.750
Dee Stegelin: something that happened to my older brother. He was gonna have cataract surgery, so he's a very curious individual. So he looked up on YouTube exactly what was going to happen in this surgery.

451
01:12:12.310 --> 01:12:12.830
Victoria Musheff: I mean…

452
01:12:12.830 --> 01:12:18.309
Dee Stegelin: it almost traumatized him. Then he was almost afraid to go ahead with it. So, I.

453
01:12:18.310 --> 01:12:18.700
Victoria Musheff: Yeah.

454
01:12:18.700 --> 01:12:29.720
Dee Stegelin: To use some caution when you use YouTube, I'm not sure that doing your own self-exploration right before a surgery is necessarily a good idea.

455
01:12:30.060 --> 01:12:30.810
Dee Stegelin: But…

456
01:12:30.810 --> 01:12:35.259
Victoria Musheff: You gotta know about tolerance, right? You're not… I couldn't probably do that.

457
01:12:35.260 --> 01:12:38.489
Dee Stegelin: But the other… the main question…

458
01:12:39.730 --> 01:12:56.670
Dee Stegelin: the main question I had was that, I have a friend here in Columbia who's had a very complex experience, and it really has made me wonder what I would do in the same situation. But she's been to all the doctors in South Carolina, and

459
01:12:56.670 --> 01:13:05.989
Dee Stegelin: They had diagnosed her with something called, it's, cutaneous T-cell lymphoma.

460
01:13:07.040 --> 01:13:12.189
Dee Stegelin: Which is, a form of lymphoma that attacks the skin.

461
01:13:12.370 --> 01:13:27.899
Dee Stegelin: And so she went to a dermatologist, she went to MUSC, they diagnosed it as T cell, and gave her extensive radiation, and then she thought she was done, and it all came back.

462
01:13:28.330 --> 01:13:38.000
Dee Stegelin: And, she just happens to have a daughter who's a physician's assistant at Yale Medical Center in the area of dermatology.

463
01:13:38.050 --> 01:13:50.580
Dee Stegelin: So, her daughter asked her for her records, and she sent them to her, and the daughter shared it with the Yale folks, and they said, get her up here as quickly as you can.

464
01:13:50.580 --> 01:14:06.170
Dee Stegelin: So she's now in Connecticut, undergoing chemotherapy, because they were able to identify that it wasn't just T cells, but it was B cells involved also. And they were not able to do that in South Carolina.

465
01:14:06.250 --> 01:14:13.719
Dee Stegelin: And I thought, where… I don't have a daughter that's a physician's assistant at Yale better.

466
01:14:14.040 --> 01:14:21.159
Dee Stegelin: But I thought, what… and I've had other friends who've had… they've kind of hit a wall in South Carolina.

467
01:14:21.380 --> 01:14:27.970
Dee Stegelin: So, I thought, well, where would I go for a really important second opinion? And I guess.

468
01:14:27.970 --> 01:14:28.610
Victoria Musheff: I was like, not…

469
01:14:28.610 --> 01:14:36.540
Dee Stegelin: I thought about Emory, and I thought about the Mayo Clinic in Jacksonville, but I wondered if you could address that.

470
01:14:37.400 --> 01:14:45.499
Victoria Musheff: So, Karen and I actually talked about this and left it out intentionally because we thought we might get people more confused, but clinical trials.

471
01:14:45.540 --> 01:15:01.849
Victoria Musheff: One of the things that you want to always think about, if you're having trouble getting a definitive diagnosis, then you can get… you can at least begin to explore what's going on, and there are websites that will provide you a list of all clinical trials, and they're usually

472
01:15:01.850 --> 01:15:16.799
Victoria Musheff: unusual diagnoses that they're looking for and trying to find solutions for. For example, pancreatic cancer is one where they have made phenomenal strides in treatment.

473
01:15:16.800 --> 01:15:27.220
Victoria Musheff: But it's hard to get an original diagnosis, and they're really hard to diagnose. But I think the main thing is if you aren't… if you don't…

474
01:15:27.540 --> 01:15:35.889
Victoria Musheff: If you're unsure of the diagnosis, the getting that second opinion, this is for getting a second opinion from a major medical

475
01:15:35.910 --> 01:15:50.339
Victoria Musheff: research university, and I'm going to say research. There has to be a hospital-based research program, and so Emory is a research university hospital. Now, Emory has a lot of clinical facilities.

476
01:15:50.360 --> 01:16:07.179
Victoria Musheff: They're not all the referral center, so you're looking for… you're asking your physician to refer you to the specialist that deals primarily with this weird… whatever it is, or the symptoms that are weird, and I think you just have to…

477
01:16:07.300 --> 01:16:18.070
Victoria Musheff: fight hard to get that referral to… and then you've got to also consider, and I think this is the main thing, what happens when you go to that referral center?

478
01:16:18.260 --> 01:16:27.480
Victoria Musheff: you travel to Minneapolis, or you go to MD Anderson, or you go to Yale, or you go to Emory, your family

479
01:16:27.910 --> 01:16:39.789
Victoria Musheff: you may be isolated from your family, so suddenly you lose your connection to the support system that you count on, and I… it's very lonely.

480
01:16:40.230 --> 01:16:48.369
Victoria Musheff: It is also very expensive. So sometimes if you're in a clinical trial, there is funding for your family.

481
01:16:48.950 --> 01:17:01.979
Victoria Musheff: To be there. Yeah. But not always. So you've got… I think it's a… this is a… this is a time where your… your team needs to… and that team, including family, needs to sit down and say.

482
01:17:02.150 --> 01:17:17.219
Victoria Musheff: can we afford this? Is this what we do? Is this the best option? Do you want to just go see what's happening? And I know there are a lot of Emeritus faculty members out there who have experience where they've gone for… to a,

483
01:17:17.280 --> 01:17:32.609
Victoria Musheff: I know someone that's been at Duke recently, where they've gone in for some major surgery there. Not… not Cupill Hospital System, not Emory, but they went to Duke, because that was where the specialist was. So you've got to find that specialist, and then you've got to figure out

484
01:17:32.620 --> 01:17:46.030
Victoria Musheff: When you have a question for the diagnosis, that's the problem, but keep asking for that referral to a major medical research center. Yeah, indeed, I think the example you gave is really a…

485
01:17:46.460 --> 01:17:50.440
Victoria Musheff: A really excellent example of the power of the net.

486
01:17:50.650 --> 01:18:02.270
Victoria Musheff: So, you're right, you don't have that PA daughter to help get you into the next step, but I think you don't know where that connection will happen in your network.

487
01:18:02.270 --> 01:18:03.000
Dee Stegelin: Huh.

488
01:18:03.000 --> 01:18:18.809
Victoria Musheff: For me, my biostatistics professor is the one who got me networked into the scleroderma research area down at MUSC, which turned out to be where I needed to go. Who would have thought your biostatistics professor on your committee

489
01:18:18.810 --> 01:18:24.249
Victoria Musheff: would be that… so you don't always know, that's why you've got to work… you want to work that network.

490
01:18:24.250 --> 01:18:30.429
Victoria Musheff: Yeah. I also would say that for this individual, let's say she didn't have the daughter to help her.

491
01:18:30.580 --> 01:18:43.699
Victoria Musheff: that also, if you can read some of the published studies in those areas, you may start to see who are the experts nationally. So, unfortunately, MUSC did not

492
01:18:44.190 --> 01:18:57.450
Victoria Musheff: hit the complete picture. That wasn't their expertise, but if you read some publications looking at that topic, or whatever disease we're dealing with, you may find those centers of excellence that are getting the funding to do the work.

493
01:18:57.590 --> 01:19:04.670
Victoria Musheff: And I know, personally, I've called places and said, you know, can I get an appointment, or can I talk with you?

494
01:19:05.360 --> 01:19:11.700
Victoria Musheff: That… feels to me, as a public health person, it feels unfair that I would have

495
01:19:12.480 --> 01:19:16.980
Victoria Musheff: such an advantage of resources compared to some of the folks that I know and work with.

496
01:19:17.130 --> 01:19:18.230
Victoria Musheff: Right.

497
01:19:18.570 --> 01:19:23.340
Victoria Musheff: But if you're part of a network, you may be able to actually be the network that connects them

498
01:19:23.830 --> 01:19:29.629
Victoria Musheff: to that, that we're… remember I told you, like I said, your network reaches into other networks.

499
01:19:30.010 --> 01:19:33.059
Victoria Musheff: Yeah. But to your point is.

500
01:19:34.100 --> 01:19:48.450
Victoria Musheff: This is where you have… your networks are important to maintain, because you don't know where that's going to help you, but for our, you know, for us, we can read some of the scientific literature to help find expertise that maybe the average person

501
01:19:48.650 --> 01:19:54.779
Victoria Musheff: can't do as easily, but… Great question, though. Yeah, I think it's really hard

502
01:19:54.900 --> 01:20:01.309
Victoria Musheff: What you're… what you… when you ask that, and you talk about that not everybody has access to the same

503
01:20:01.450 --> 01:20:18.649
Victoria Musheff: healthcare resources. We are extremely lucky in the healthcare system that we're in with PIPA, for most of us that have PIPA. We have most of us that have Medicare. There's a… there's a… there is a…

504
01:20:18.800 --> 01:20:33.409
Victoria Musheff: And it's not like we actually worked here for 30-something years in order to have access to those services, and that helps us as well. But I think it's the communication, and it's the reading, and it's the asking the questions, and the studying about it.

505
01:20:33.790 --> 01:20:35.350
Victoria Musheff: And, and let's…

506
01:20:35.410 --> 01:20:51.010
Victoria Musheff: be honest, not everybody… you know, I look at people when they go in, and this'll be even simpler. You're getting ready to have cataract surgery, and somebody said, you know, don't look at the cataract surgery, because my mother had her cataract surgery, the doctor was filming it in the waiting room.

507
01:20:51.040 --> 01:21:08.389
Victoria Musheff: You know, because it was, you know, he thought it was… everybody would be interested in it. I was, my dad wasn't. But I… but I looked at that… when I went in to have cataract surgery, everybody that was going to have cataract surgery was there the same day, and we all had to sit down with the financial planner.

508
01:21:08.470 --> 01:21:26.249
Victoria Musheff: Who was saying, this is… these are your choices, and this was what it costs. Which cataract surgery do you want? Well, that's intimidating, yeah. And it's really sad when you walk back out to the waiting room, and you're listening to people talk about what they can't afford for their cataract surgery.

509
01:21:26.250 --> 01:21:37.009
Victoria Musheff: And you wish everybody could have the same thing, but they don't. They, they, they, but these are the… but they're extremes of, of services.

510
01:21:37.030 --> 01:21:52.810
Victoria Musheff: It's like hearing aids. You can buy your hearing aid at the drugstore, or you can go to an audiologist, and you can see a variety of types of hearing aids. You get to choose based upon your personal resources, and most people choose what

511
01:21:52.820 --> 01:22:06.539
Victoria Musheff: what is within their resources. And I think that goes with… with the same conversation about going into… going to, far away from home for services and camping.

512
01:22:07.020 --> 01:22:08.600
Victoria Musheff: It is…

513
01:22:09.000 --> 01:22:24.300
Victoria Musheff: I know Karen drives down to Charleston, and that's a long drive. Yeah, one day I won't be able to, and that'll be a turning point. Yeah, and it's a long drive. I sent my dad to Charleston in an ambulance, because they couldn't call him.

514
01:22:24.470 --> 01:22:36.239
Victoria Musheff: And so… and then they didn't want… and then they wouldn't send me back home… back to me in an ambulance. You know, because of the… you know, you could send somebody from hospital to hospital, but not from…

515
01:22:36.470 --> 01:22:41.629
Victoria Musheff: Hospital to home. So there are a lot of things that go on that are just,

516
01:22:41.810 --> 01:22:49.619
Victoria Musheff: there are decisions that you have to reach, and every individual family and team will make those decisions, and I think that's…

517
01:22:49.800 --> 01:22:55.609
Victoria Musheff: That's where keeping all this collection of information, thinking about it, talking about it, researching it.

518
01:22:56.300 --> 01:23:04.230
Victoria Musheff: is critical. Well, and… And it's not easy. And you're… the woman you're mentioning,

519
01:23:05.110 --> 01:23:19.620
Victoria Musheff: that was probably a rare condition, and I think that's part of the challenge with a diagnosis, when things are kind of rare. It's more likely to slip through. I know, with scleroderma.

520
01:23:19.950 --> 01:23:24.429
Victoria Musheff: It's estimated that the average time to diagnosis is 7 years.

521
01:23:24.910 --> 01:23:25.770
Dee Stegelin: Oh, my goodness.

522
01:23:25.770 --> 01:23:26.549
Victoria Musheff: I'm tired.

523
01:23:26.750 --> 01:23:37.460
Victoria Musheff: Now, that's average, right? So some people are much less, some people are longer, depends on where they are and what things… so I think the stronger your network and your communication across

524
01:23:37.660 --> 01:23:47.600
Victoria Musheff: network, the… you increase your chance of finding what you need faster, but the reality is, is it is challenging, and persistence will pay off.

525
01:23:48.510 --> 01:24:06.329
Victoria Musheff: But it can be very exhausting and discouraging. And that's not the only disorder that takes a lot of time for diagnosis. Almost all the autoimmune disorders that are out there are really difficult for diagnosis. There's some other things… anytime there's something weird.

526
01:24:06.350 --> 01:24:23.819
Victoria Musheff: Most of y'all know, a few years ago, I had a total global amnesia episode, and when I started looking at the literature about it, basically, it's a catch-all phrase, because it generally doesn't happen a second time, and it…

527
01:24:23.970 --> 01:24:39.380
Victoria Musheff: from the time of the first one to when you actually have some kind of definitive diagnosis, it's on average 7 years, because it doesn't… most people never experience the second one. People who experience a second one, or a third one, or a fourth one.

528
01:24:39.900 --> 01:24:51.549
Victoria Musheff: after a few years, they'll finally decide what that really is. But if it doesn't happen again, then you just had some weird episode. And I think that's why…

529
01:24:51.970 --> 01:24:59.850
Victoria Musheff: Things that are unusual are harder to diagnose, as opposed to something like cardiac disease, where you have

530
01:24:59.890 --> 01:25:18.639
Victoria Musheff: ways of picking up, diagnosing… It's more common, and so, yeah, to meet people more. Our hypertension, you know, our… some of the things that… diabetes, even, things that are more easily treated sometimes are easily treated because they've been around for a while.

531
01:25:18.640 --> 01:25:25.089
Victoria Musheff: And we know what to do with them, and how to manage them. And there's a lot of preventative data out there.

532
01:25:25.090 --> 01:25:31.699
Victoria Musheff: Dee, I think that this is where AI is probably going to help us in an encouraging way.

533
01:25:31.760 --> 01:25:47.969
Victoria Musheff: Yes. As the healthcare provider, if it is a rare condition, they can't… their likelihood of even having read about it in medical school, right? Yeah. But, that… I think it's called… was it called? One evidence of the,

534
01:25:48.150 --> 01:25:53.419
Victoria Musheff: website that I mentioned out of the New England Journal of Medicine that was on the, information list.

535
01:25:54.240 --> 01:26:01.100
Victoria Musheff: I think that kind of a tool is going to help Any healthcare provider

536
01:26:01.560 --> 01:26:05.049
Victoria Musheff: help somebody get a quicker diagnosis. They're not…

537
01:26:05.230 --> 01:26:18.690
Victoria Musheff: I'm not saying it's always going to be accurate. I know I put the three common symptoms for, just out of curiosity, scleroderma, that patients typically experience in the beginning, and it came up with,

538
01:26:18.740 --> 01:26:28.210
Victoria Musheff: the diagnosis of scleroderma as a possibility, and I found that very encouraging, because any primary care provider could put those things in, and

539
01:26:28.470 --> 01:26:38.509
Victoria Musheff: at least raise up the possibility that this could be something to consider. So, I would even encourage all of us to get familiar with those tools.

540
01:26:39.230 --> 01:26:42.510
Victoria Musheff: So that we might be the first one to look.

541
01:26:42.790 --> 01:26:53.790
Victoria Musheff: But you also… it's a bouncing act. You don't want to be neurotic about it. You know, it's very stressful. You want to become fearful, but…

542
01:26:54.110 --> 01:27:00.950
Victoria Musheff: That is so important. You know, the more you can look up, the more symptoms you're going to have, so if you know…

543
01:27:01.400 --> 01:27:16.620
Victoria Musheff: Every side effect of every medication you take, and you have one quinge, and, you know, you're like, oh my god, I gotta stop that medication because I've got this side effect. And in truth, some medication takes several weeks to begin to be effective.

544
01:27:16.620 --> 01:27:31.849
Victoria Musheff: And some of those side effects are minimized. You know, you're on a drug that causes some dizziness, but sometimes some drugs will cause dizziness for the first 3 or 4 weeks, and then it goes away. People don't experience it anymore, their body sort of adapts to it.

545
01:27:31.850 --> 01:27:47.350
Victoria Musheff: and it's treating the particular, disease that needs to be treated with that particular medication, so your body begins to adapt to those side effects, or doesn't. And I think that's where all of us just have to be

546
01:27:47.590 --> 01:27:59.319
Victoria Musheff: aware, knowledgeable, and talk to our physicians carefully. Yeah, and that knowledgeableness is… is a… Work in progress, right?

547
01:27:59.450 --> 01:28:10.249
Victoria Musheff: With every new thing you have to consider, you start over again with your research to build your knowledge and comfort with a particular area.

548
01:28:10.390 --> 01:28:16.230
Victoria Musheff: So that you feel like you can make a reasonable decision. And…

549
01:28:16.350 --> 01:28:22.159
Victoria Musheff: So, it's not like you're going to have it figured out, and you're not going to be working continuously.

550
01:28:22.310 --> 01:28:24.149
Victoria Musheff: I think, too…

551
01:28:25.280 --> 01:28:39.889
Victoria Musheff: So you mentioned, Debbie, people thinking 5 years out, 10 years out. We probably all should do that and think about who will step in and help me make decisions when this becomes harder for me to do on my own, to do the research and the decision-making.

552
01:28:39.930 --> 01:28:49.429
Victoria Musheff: That's, to me, in itself is not an easy thing, especially as somebody, you know, I don't have children or a spouse to kind of default to.

553
01:28:50.470 --> 01:28:54.470
Victoria Musheff: But, even with,

554
01:28:54.710 --> 01:29:08.330
Victoria Musheff: getting healthcare, like, so Debbie mentioned, going to… well, I go to Charleston, all of us probably have some things where we can do it easily at a certain point in life, and it'll become harder later, so how do we plan for that?

555
01:29:08.540 --> 01:29:15.929
Victoria Musheff: Can we… Regroup our team to be more local and,

556
01:29:16.380 --> 01:29:21.849
Victoria Musheff: near us and more accessible, and then how do we… we gotta educate them, right? Like, we gotta…

557
01:29:21.930 --> 01:29:25.630
Victoria Musheff: We gotta get them ready to be that team.

558
01:29:25.630 --> 01:29:43.299
Victoria Musheff: And communicate with maybe the specialists, even though you can't see the specialist anymore. Or you use telehealth. Or you get a self-driving car that drives you to Charleston, and so… Okay, I'd rather take a train.

559
01:29:43.300 --> 01:30:01.530
Victoria Musheff: I don't know if the train goes down there, but I would say… okay, so I was thinking about Uber. I've never been in Uber, but I used to ride taxis all the time. They don't have taxis anymore. So, I was never afraid of a taxi, so why should I be afraid to Uber somewhere, right? So, if I can't drive, there are other means of getting places.

560
01:30:01.600 --> 01:30:18.680
Victoria Musheff: And so I have to begin to think outside the box for ourselves of things that we are comfortable do… that we… where can we make adjustments? Meals on Wheels is great for people, for providing people one hot meal a day if they're staying at home.

561
01:30:18.680 --> 01:30:29.389
Victoria Musheff: But what happens for those other meals, and how do they manage those? So there are a lot of pieces of the puzzle that I think can be handled, but you need to think about

562
01:30:29.630 --> 01:30:33.980
Victoria Musheff: that process, and I… and I don't, you know…

563
01:30:34.900 --> 01:30:42.110
Victoria Musheff: The advocacy piece of it is… okay, so for me, I love my… private.

564
01:30:42.450 --> 01:30:46.779
Victoria Musheff: PC. My personal private position is

565
01:30:47.150 --> 01:30:59.490
Victoria Musheff: Absolutely wonderful. He talks to me about every article I've ever read. He brings the articles to me to read. I mean, we have this wonderful discussion, but you know, he's really close to my age.

566
01:30:59.960 --> 01:31:03.240
Victoria Musheff: Yeah, he's gonna retire for a while.

567
01:31:03.540 --> 01:31:16.689
Victoria Musheff: And I think, you know, we see the… we know that at some point we'll have to look for another, you know, primary care doctor. I think that is important, and I'm actually curious.

568
01:31:16.900 --> 01:31:22.690
Victoria Musheff: from… If… if you are willing to share some things about… what…

569
01:31:22.940 --> 01:31:29.020
Victoria Musheff: How you perceive the group of people you work with, or if you feel like they act as a team.

570
01:31:29.180 --> 01:31:31.979
Victoria Musheff: What you feel is working, not working.

571
01:31:32.170 --> 01:31:37.700
Victoria Musheff: What's working now that you worry may not work so well?

572
01:31:37.850 --> 01:31:39.510
Victoria Musheff: 5, 10 years out.

573
01:31:40.320 --> 01:31:42.580
Victoria Musheff: If anybody wants to share.

574
01:31:50.090 --> 01:31:56.560
Victoria Musheff: Or if you have any general questions, anything that you want to ask, No comment.

575
01:31:57.510 --> 01:32:04.860
Victoria Musheff: If not, we're almost… we are at 11.30, so, thank y'all for staying with us.

576
01:32:06.080 --> 01:32:07.420
Victoria Musheff: Yeah, and paid…

577
01:32:07.420 --> 01:32:11.330
Dee Stegelin: Slides? Can we get the slides? Your slides?

578
01:32:11.330 --> 01:32:13.670
Victoria Musheff: Yes. Okay.

579
01:32:13.700 --> 01:32:37.559
Victoria Musheff: And also know that the well-being videos are posted specifically on our well-being webpage, so you'll have to hunt for them or anything, and we'll get this posted right away, so you can see the slides and watch it again. There are some really great web links in there. I hope y'all will click on those and check those out, because those are really wonderful references and resources that you can use.

580
01:32:37.560 --> 01:32:43.290
Victoria Musheff: As you're making plans. And it may not be for yourself, it may be for a parent, or of…

581
01:32:43.290 --> 01:32:51.169
Victoria Musheff: Or a relative that you're actually looking at how you help them manage to… So think about your team.

582
01:32:52.070 --> 01:32:56.860
Victoria Musheff: Sharpen those skills for getting and interpreting health information and using it?

583
01:32:57.180 --> 01:33:00.530
Victoria Musheff: And, gets…

584
01:33:00.710 --> 01:33:12.460
Victoria Musheff: you know, build up your, ability to kind of organize and control your health information so you can use it in your appointments. And remember who you are. You're… you are…

585
01:33:12.490 --> 01:33:30.070
Victoria Musheff: people who have spent your life studying things and examining things and researching things, you have the skill set, you've stayed active, you've got the technology available to you through the Myronist College, so you've got resources that

586
01:33:30.110 --> 01:33:36.839
Victoria Musheff: The vast majority of people don't have access to it, just by being who you are.

587
01:33:38.580 --> 01:33:42.170
Victoria Musheff: And we know that you can solve any problem.

588
01:33:43.160 --> 01:33:44.060
Victoria Musheff: Right?

589
01:33:44.500 --> 01:33:45.640
Dee Stegelin: Yeah.

590
01:33:45.960 --> 01:33:50.460
Victoria Musheff: I don't know, solve, but you can come up with a satisfactory choice.

591
01:33:50.560 --> 01:33:53.480
Victoria Musheff: To manage it.

592
01:33:54.100 --> 01:33:56.490
Victoria Musheff: You can't always solve a problem, you can manage a problem.

593
01:33:57.410 --> 01:33:58.450
Dee Stegelin: Thank you.

594
01:33:59.450 --> 01:34:03.569
Victoria Musheff: Bye, guys. Thank you.

595
01:34:03.830 --> 01:34:07.000
Victoria Musheff: Thank you. Good luck, keep us hoisted and being around!

596
01:34:07.000 --> 01:34:08.840
Dee Stegelin: Okay. Bye.

597
01:34:09.350 --> 01:34:10.740
Victoria Musheff: Come on, baby!