Lewy Body Roller Coaster
Lewy Body Roller Coaster
Roe's Journey: Living with Lewy Body Dementia and Sleep Disorders Part 1
Ever wondered about the connection between sleep disorders and neurodegenerative diseases? Roe shares her experience with obstructive sleep apnea and REM Sleep Behavior Disorder, discovered during an overnight sleep study at the University of Cincinnati. Despite initial reluctance to use a CPAP machine, she faced the alarming reality that a significant percentage of RBD patients may develop neurodegenerative diseases within a decade. Through personal anecdotes and extensive testing, Roe's journey to a Lewy Body Dementia diagnosis unfolds, emphasizing the critical nature of early diagnosis and treatment.
Thank you all for your continued support and patience with us as we try really hard to get a new podcast done- hoping we get one a week but as you all know, Lewy and life sometimes get in the way. We know you all understand and support us anyway and for that we thank you!!! xoxo
Remember...We are doing this for all of us and we thank you from the bottom of our hearts.
Should you wish to bless us with your support for the podcast, you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb65
Welcome back podcast family.
Speaker 2:Yes, welcome back all y'all.
Speaker 1:I want to thank yous. I had y'all on there, curry, I had y'all, but my brother reminded me I'm back in Philadelphia and we say yous, so I guess we'll let you get away with it. I just want'all, but my brother reminded me I'm back in Philadelphia and we say yous, I guess we'll let you get away with it.
Speaker 1:I just want to thank yous as a teacher, that drives me crazy too. Why are you a USC? But anyway for being so patient and supportive. Before we introduce today's guest, we want to remind all of our listeners that we are not giving medical advice. We are just sharing our open and honest feelings and thoughts as we live with Lewy body dementia.
Speaker 2:Yeah Now, folks, I want to give a big thanks to each and every one of our supporters out there. Y'all have just been great with us this whole time. We've gone through a period here where we didn't do some podcast because life happened, but we're getting back into it now. We're starting off good today, so we just want to thank you all for still supporting us.
Speaker 1:Yeah, yeah, it's really been humbling to us because we stress out when we're not able to get an episode off for sometimes a couple weeks or more. But you know life, you all listening know the Louis life, so that's what everybody understands. Another quick reminder about the Zoom support meetings. All the links are the same link and all the information is above the announcements. I think it's called events now on both of our Facebook pages and someone always posts the day of the meeting what meeting it is. So please feel free to join us. And I want to do a shout out to Julie, who posts those inspirational, positive posts every single day. And if you all could send her hugs and love and prayers and strength, because Ron's not doing her husband Ron, who has Lewy bodies and doing so well, but still, on the face of all that, she's still posting those positive messages every day. So thank you, judy, from me and everybody in the groups exactly well, folks.
Speaker 2:Uh, I'd like to give another reminder that we're not giving out medical advice. We're only sharing our experiences. We're only sharing our experiences and personal journeys as we travel through this thing called Lewy Body Dementia. So let's get this thing started this week. Please welcome our friend Ro. Her name is Rose, but she goes by Ro, so if you catch me, I may call her Ro or I may call her Rose. But Ro, could you introduce yourself and tell us where you're from and how long ago you were diagnosed and how old are you, and then we can ask you some more questions.
Speaker 3:I'm happy to Thank you, linda, and thank you, curry, for having me today. I'm Roe Pagoli. I go by Roe or Rosie or Rosanna, it doesn't matter, but Roe is the most comfortable for me. I'm from Cincinnati, ohio, and I'm 65 years old.
Speaker 1:Say it again, linda, I was going to say or you go by, hey you, hey you, hey you.
Speaker 3:Yeah, I was diagnosed with Lewy body disease and mild cognitive impairment in April of this year.
Speaker 2:Wow.
Speaker 1:That's new. She's a newbie.
Speaker 2:You bet you Can you share with us how it all started for you. What were some of the first symptoms you had that made you seek medical attention?
Speaker 3:Yeah, curry, you know I've had symptoms for about eight or nine years and I first started noticing some changes with my memory and that kind of coincided with some changes in my sleep pattern. But that's going back to like 2016. I started losing things. I lost my wedding band set and he replaced it. I lost the second set. I lost credit cards. You know some serious stuff there.
Speaker 3:But the first time I noticed there was something going on with my memory, I had attended my niece's graduation at Penn State and stayed overnight and I got in the car the next day, got on the highway and I'm thinking to myself wait, what was the name of that town? I stayed in last night and I could not recall it, and what I found was the more I tried to think about the name of the town, the more anxious I became, and so it never did come back to me. A couple weeks after that, I was leaving the grocery store and I come out and I'm in the parking lot and I'm like whoa, where am I? And I knew like holy crap, man, something is not right, and it took me a minute or two to really get my bearings and figure out.
Speaker 3:Okay, you went grocery shopping, you're going to look for your car, you're going to drive home, and that's eight years ago. One of the things that really got my attention was I was engrossed in doing something and the question popped in my head like wait, wait a second, where were we? When my husband proposed to me and, honest to God, I knew we were someplace fun, we were on vacation, but I couldn't think of the place we were. For the life of me, that's an important event in your life, right.
Speaker 2:Oh yeah.
Speaker 3:So, again, I stressed about it and then I kind of caved in. I went over to my husband like this is going to sound crazy, but where were we when you proposed to me? He's like, bro, we were in Key West, what do you mean? I'm like oh yeah, you're right. Yep, we had a blast. I turned around and literally five minutes later I could not remember Key West. That's when I knew like, okay, something is going on here. Now, when was that? How long ago? Was that 2016,? So about eight years ago, okay.
Speaker 1:Did you go see a doctor then, or you?
Speaker 3:just I went to see my GP, linda, and she immediately wanted to do a brain CAT scan and run tests. And, quite frankly, my dad was a doctor and we grew up like everything was you know a prescription for this or go get that test done. And I've lived my whole life trying to not stress over. You know it's got to be really serious, right? Whole life trying to not stress over. You know it's got to be really serious, right? So on top of that, I didn't want to jump into all the testing and stuff.
Speaker 3:Eight years ago I thought, well, it's stress, it's stress. And at the same time I had had a very traumatic event that took place in my life and I attribute it to my son, had severed the ties with me, him and his girlfriend, and these symptoms seemed to surface right around all this other drama with my son and I just thought, hey, that's my body reacting, right. So I just figured um, let's let it play out, let's see what happens. And and that's actually when the nightmares started, the night terrors started right around the same time. Um, I've come to understand that night terrors and, uh, rem, sleep disorder, that's like a hallmark of Louie.
Speaker 3:Didn't know it back then, but when those dreams started, they, it was one after the other, night after night, and it was always about someone trying to murder my son. Now remember that's happening in the background, that he's like never want to see you again, you're not going to see your grandchildren, and so I just thought, god, it's got to be related, right. So so I really took my time. So I really took my time. And then I also had an elderly mom that I was trying to care for, 700 miles away. I found myself flying back and forth to the East Coast to help take care of my mom, and so my health issues. Am I not getting a good night's sleep? Am I losing things? It's secondary to everything else going on. Am I the only one that that happens to? To that we push it off the back burner.
Speaker 1:I think that's a defense mechanism.
Speaker 2:Yeah.
Speaker 1:Really yeah, because, curry, how long was it before you really spoke up, like how, like even years?
Speaker 2:years I'd had hallucinations starting about 2007, and I really didn't speak up until about 2010. And then, when it really got bad was 2016. That's when I told her she needs to go ahead and let me go to the doctor, because she had been trying to get me to go and I just wouldn't go.
Speaker 1:Really, you wouldn't go to the doctor, shocker.
Speaker 2:Well, I thought it was all me driving.
Speaker 1:You know you're a bugger when it comes to going and getting. I was just pointing my finger at him. Everyone that's listening. But I totally understand, like I can only imagine it's a defense mechanism and just like for caregivers, it's the defense mechanism to push it away or down or pretend like it's not happened. I think is how we survive sometimes.
Speaker 3:It's how we get through day to day, right, right.
Speaker 1:And caring for everybody else in the family, especially the moms no offense, dads out there and you're taking care of your mom from far away. Stress clearly has a lot to do with it. That doesn't help either, I can tell you. I'm not sure how long Jim was. Things were going wrong until it was the beginning in, I guess, the beginning of 2017. Maybe it was springtime. And he came home from his midnight shift 12 at night, six at night to six in the morning, midnight shift 12 at night, 6 at night to 6 in the morning and he said I think I may need to go to the doctor's because I was sitting at my desk and I couldn't remember the kids the second floor of our house, like where the kids' rooms were. And I'm like that's weird and I always just brush it off too, because he worked 12-hour shifts, 6 in the morning till 6 at night, or 6 hour shifts, six in the morning till six at night, or six at night till six in the morning, and they rotate it.
Speaker 1:And um which we've been finding more and more people on the Facebook pages saying that, like Carla's husband who was in the documentary with us, her husband was a nurse on swing shift. So stress? They told Jim he had stress. They said you got a lot of stress and, curry, you've met Jim. That man never stressed and he had the same stressful job in the control center at the electric company for 30-some years. So they made him take two weeks off and then the whole testing happened. So I'm going to ask her this, since I'm on this Curry, I just did a segue.
Speaker 1:So can you share with us what tests did they do to actually diagnose you with LBD? And I don't remember whether you said you went to your GP or neurologist.
Speaker 3:Back then, I went to the GP, but I did not have any testing done. Okay, uh, it wasn't until 2020 I think it was 2020, because it was around COVID that I, uh, finally conceded to having the sleep study done, because, you know, a a couple of years had gone by, I was dealing with insomnia and nightmares and thrashing, and we had already begun to look at sleeping in separate rooms, which, by the way, absolutely sucks, but it's the only way I can survive is to sleep in the spare bedroom. Yep. So what was your question?
Speaker 1:linda. No, it's okay, I just what I find when I'm getting ready to break. It doesn't always work, as curry will tell you. Um, I try to think of something totally different what testing. I had yeah, I was just saying because when I had it, when I decided to switch rooms for my own safety, that was probably one of the hardest things I've ever had to do. But what tests? So you went to your GP and then, later on, what tests?
Speaker 3:The sleep study, the overnight sleep study at University of Cincinnati. So that was around 2020 and it had to be 2020 because the follow-up was through virtual. He wasn't even seeing patients in person, right? So it's during the virtual follow-up meeting that my sleep doctor says to me you have obstructive sleep apnea and you have something called RBD, which is a REM sleep disorder, and he gave me I want you to get a CPAP machine. And he finished the conversation by saying scared the hell out of me. He said 97% of patients diagnosed with RBD will go on to develop a neurodegenerative disease in 10 to 15 years.
Speaker 3:And I was flabbergasted. I was like what are you saying to me? It's sleep. How does that have to do with my brain? So you talk about denial. I put off using a CPAP machine for a couple of years. I truly I thought it's going to constrict, it's going to I'll lose weight, I'll do whatever I can. Maybe that'll help Nothing. So when I was finally given the diagnosis of Lewy body, they said you need to be using a CPAP machine. This is definitely, it definitely correlates with Lewy body what you're going through at night, and I began to understand the connection between my sleep and this neurodegenerative disease.
Speaker 1:And I know I asked you this in Zoom the other day because I've only ever heard REM as R-E-M. So what does?
Speaker 3:R-B.
Speaker 1:RBD stand for yeah.
Speaker 3:So it's called REM. Let's see, I wrote it down for you sleep apnea and REM sleep behavior disorder. So think of it this way Linda R for REM behavior disorder.
Speaker 1:Does that?
Speaker 3:make sense.
Speaker 1:No, yeah, I just have never heard it. I don't care. Have you ever heard it called RBD?
Speaker 2:Yeah, some people call it RBD Okay.
Speaker 1:I guess I never.
Speaker 2:It depends on what the doctor calls it.
Speaker 3:Yeah, so once I had that follow-up meeting after the sleep study, immediately my sleep doctor's like I would like you to go get neuropsych testing and then we'll run, we'll see what's going on with your brain. And he knew there was some memory issues and again, because of my focus was on my mom. I'm like that's 2020. I'm not doing all that I can't. There's no, there was nothing left of me to give. So my mom died a year ago, last November, and that's when I really and truly started looking at. Okay, I got to deal with this. Now he wants me to get the neuropsych testing. I'll go do the testing. So, to answer your question, they did the hours and hours of neuropsych testing in February. The results of those led to a brain MRI. They ordered the lumbar puncture where they found the alpha-synuclein protein in the cerebral spinal fluid. And then I did end up going down to University of Miami and they did that acinuclein biopsy which showed that I have that protein. Does that help answer that question?
Speaker 1:Linda, no, yeah, yeah, because we always try to ask each person we have come on who's been diagnosed. Just so, the people listening, I think everybody goes through that four-hour testing. Corey, you did that right, yeah, yeah, which is to me torture. I can't imagine doing it as someone who's being tested for a potential brain issue. I guess it's meant to be that way. See how you perform after four hours of Stressful testing. Yeah, right, stressful testing. So again, I want to thank you for coming on because your diagnosis is new, like you said in April, even though you've been having these symptoms. So you shared that you were having the RBD and the memory issues. Can you share with us Sorry, I just lost my place that you were on early diagnosis, which is great? That sounds terrible, but that's great because the average is what? 18 to 24 months now, I think it's up to to get diagnosed.
Speaker 2:And the good part about being early diagnosed is you're going to start your treatment earlier. They say you're going to have a better journey than if you were diagnosed late.
Speaker 1:Yeah, yeah, that's true. So, from the initial symptoms you had until after you were diagnosed in April, are there different symptoms you're having now? Yes, can you share those? So?
Speaker 3:I'd say the last six, seven months since that diagnosis and, by the way, the diagnosis was, you know, not handled properly and we could get into that in a minute but they immediately put me on denepazil. They immediately put me on denepazil. What I noticed was some pretty serious changes with the cognition. So again, my memory was impacted. I started having bouts with incontinence Right now I'm getting by using a little panty liner, but I may have to advance to something else going forward and that kept me from working. Quite frankly, I was down to two and a half days a week and I felt like, oh my God, I can't depend on my bladder. So I couldn't remember my clients' names. I'm sorry, curry.
Speaker 2:Let me tell you something. Don't be ashamed at all about having to use the incontinence underwear. I've been in it since 2017. It's just part of it. It's just part of it, man.
Speaker 3:Yeah, it's just part of it. Yep, so the memory changes the incontinence. I blacked out twice. That scared the hell out of me. One time I was driving and everything went black, everything. And thank God it was just a couple seconds but, like god forbid, I was on the highway or I had swerved. You know, you never know. So, um, that was enough. That's when I said I'm not working anymore, I can't take a chance on this. And and then I've noticed, like I'll be eating dinner and the fork flies out of my hand. It's like I can't hold it. Um, goofy things that you, you think what? How did that happen? You know, um, there's been a terrible, terrible, like cotton mouth where I can't. I did start using that. What is that called?
Speaker 2:Biotin.
Speaker 3:Yes, I found that in my husband's bathroom closet. I'm like you have this.
Speaker 2:Yeah, it worked good.
Speaker 3:So I've just started using it last couple of days. But it was intolerable that I'd be popping mints or Lifesaver something drinking water and I just could not get rid of that feeling of dry mouth, which is weird because at the same time I notice an excess of saliva. You'd think an excess of saliva is going to keep your mouth from being dry, but it's, you know. So I don't understand. But so these kinds of symptoms are what I'm dealing with Currently, and some muscle I've never had, like the like the Charlie horse, or the muscle spasm where you wake up, you jump out of bed and you can't stand. I started having those middle of the night, and so you deal with it, right.
Speaker 1:Yeah, and it's Curry's chomping on something right now, as she usually does. Do you think it's the medicine, Curry, or do you think it's just one of the symptoms of Lewy for you?
Speaker 2:I think it's part of Lewy. It could be part of both, but I really do think it's more Lewy than anything.
Speaker 1:Yeah, and again, we're not giving medical advice, we're just sharing our experiences. What helped my husband was magnesium. They make these. He called them horse pills because they were so big we had to cut them in half, so he would take a half of one and that helped his cramping in that charlie horse thing. Yeah, did you take anything for yours?
Speaker 3:that magnesium 350 milligram yeah, and I do take magnesium every day. I have for years. Did you take anything for yours? Magnesium 350 milligrams, and I do take magnesium every day. I have for years.
Speaker 1:But this is just something new that I've not experienced, and it could go away tomorrow and something else could happen. That's just kind of what this crazy disease does. So this next question I think we ask people to share all the time. So you got the official diagnosis in April of 2024. And then when did the doctor want to see you again?
Speaker 3:So after the testing was done, I went into the neuropsych department and the young woman that gave me my diagnosis I had never met her before. She was a neuropsychiatrist, I think is what she was called. So she said to me um, you have something called Lewy body disease. You have mild cognitive impairment. This is a progressive disease. There is no cure for it. They say that the lifespan is about five to eight years. She said but I can't give you a timeframe. What I want you to do is go home and get your things in order and then come back in a year things in order, and then come back in a year April of 2025, you're going to be seeing my colleague, dr Schatz, because I just took a position at Cleveland Clinic and I was like, wait, I'm trying to digest what she's telling me. I said wait, tell me about that timeframe. She goes well, there is no timeframe. She goes. Everybody's different, but what they say is five to eight years, depending on when it's diagnosed. And she goes Ro, you could leave here today and get hit by a bus. She says that's how life is. She said I can't tell you how long you have. I just know that the only definitive way to determine if you have Lewy body is after you die and they do an autopsy on the brain. She said but for now, everything the MRI, the lumbar puncture, that's all pointing to Lewy body disease.
Speaker 3:So there's a saying in. I've started, started reading some. What do they call it? Not alternative medicine, it's another, it's another type of MD, but the joke is what they say about traditional neurologists. They diagnose and say, adios, that's the joke and it's so true and that was my experience. And it's very sad that our medical industry is set up for the benefit of the physician, for the benefit of the hospital. We need to change that so that the patient is the focus. The patient becomes the one that helps to make those decisions and, you know, forges their path right.
Speaker 1:Yep, and we usually most people when they come on and they share their story. You know, here's your diagnosis, get your fears and all you see in six months. But when she said a year, I'm like ugh. And we're on this soapbox, Kari and I. We've been on it for years now is you need to treat the whole person just like they treat somebody with cancer and that is happening more, but just not enough.
Speaker 2:See my doctor, my GP. I'd been to a neurologist Long story, I never go back to one. So my GP diagnosed me and he wanted to see me every 30 days for the first year and as he was working on getting my medications right, and then after that it was every 90 days. Uh, but I don't. I never have been able to understand how neurologists can see you once a year for 15 or 20 minutes and then be able to do anything for you.
Speaker 3:It just doesn't make no sense well, when the when the symptoms kind of got worse around august or so, I called this uh, this colleague of hers to make an appointment and they said, well, we could see you in six months. Like no, the blackouts are happening now, the incontinence is happening, now my memory is out the window. And they said, well, we can get you in to see another neurologist in four weeks, but you have to go through another series of neuropsych testing. Like, wait, this is August and I just did it in February. You want me to do all of that again? She said, in order to see another doctor, and I jumped through the hoops what else are you going to do?
Speaker 1:Was it in the same practice, the doctor?
Speaker 3:It was and the thing that surprised me I work at University of Cincinnati. That's what I was thinking Linda, the insurance, somebody's making a buck somewhere. But I worked at University of Cincinnati and that's where I was being seen and, I'm sorry, I lost my train of thought. It was the same practice and this time I went in and I saw this young guy. I call him younger, he's probably in his 40s. To me that's younger but brilliant, brilliant young man.
Speaker 3:And I went in there with a list of 20 questions and I wanted to know why don't you have any information on Lewy body in your waiting room? You have plenty on ALS. You have plenty on Alzheimer's. Where information on Lewy body in your waiting room? You have plenty on ALS. You have plenty on Alzheimer's. Where's the Lewy body stuff? I asked him how many patients of Lewy body do you see in your practice? He said about a third of his patients are Lewy body, which gave me some hope. I said I've been doing research and I've heard about Louis body centers of excellence all over the country. Why isn't university of Cincinnati in that list of 30 in the consortium? He goes oh, we submitted our application, we're in the process. It takes about two years. So everything I asked I was satisfied with. And, linda, if I told you, he spent an hour and 20 minutes with me. That's unheard of. He said do you want to come back in four months or do you want to come back in six months?
Speaker 1:Yeah, I said yeah, let's make it four months yeah because he's younger.
Speaker 1:When we moved to New Orleans area, I was in with that doctor for over an hour and a half for the first time and his nurses kept coming and I know they were coming to the door to tell him you're back, you're back and you're getting backed up. But I didn't. I was like same thing I have. I need you to know. I had this whole list of things. I wanted this new guy you know to know, cause on his website he said he was. You know he specializes in Louie, but he also specialized in like 12 other things too. Now you know we're not throwing all neurologists under the bus Of course not.
Speaker 1:Now I just think there's, from what I've been hearing is there's a shortage of neurologists in our country, so they're doing like double time, so they don't. You know it's, I get it, but it's still not acceptable. You know to, but we've, I don't know, curry, I think it might be 50, 50. How many people are seeing their gps now, instead of neurologist versus neurologist um?
Speaker 3:so I've got a remarkable gp plus because I was with the integrative department at uc. I also see an integrative physician there and we talk about meditation, we talk about massage, we talk about diet, all of those extra things, you know. People think they're extra. Guess what? It's part of the picture.
Speaker 1:Yep, it needs to be part of the picture for a real holistic a true, holistic, yeah, and I think that's what the center of excellences are trying to do is treat holistically. And I know I've told this story when Jim went to his urologist, you know, and they doubled his med and made his dementia get worse, and I'm like you need to know the whole person, not just his privates. Okay, so I'm with this one is. I just wanted to ask this, both of you guys, first you row how does it make you feel, especially being someone early, newly diagnosed early and newly, which we rarely have that with people usually it's a long diagnosis diagnosis. So how does it make you feel when someone learns of your diagnosis and they say you look fine so, yeah, to be honest, linda, it makes me feel invisible.
Speaker 3:It really does. It makes me feel like everything that's happening to me, my emotional, the mental changes that are taking place makes me feel like it's all in my head. A few months ago, I mentioned to my sister that I was driving in the car and listening to Bruce Springsteen Born to Run. And I said to my sister man, the thought popped in my head Is there going to come a time when I'm not able to sing those words, that that I love so much? Right, she's like don't go there, don't even think that. Now I can't stop those thoughts from popping in my head. I'm not going to dwell on them, but I'm not able to, like you know, arrest it and stop it right there. Those thoughts are going to occur to us. Right, I'm going to remember the words to my favorite song.
Speaker 2:Music is normally the last thing we go, that's good it really is, that's good.
Speaker 3:I love my music. But seriously, when someone cuts you off like that, like don't go there, don't think that I'm going to think that I'm not going to dwell on it, I'm not gonna live there, but but allow me to have those thoughts.
Speaker 1:I think it's part of my acceptance process, linda, you know yeah, I mean, we all know, with this crazy disease, that we've heard over and over again like j Jim's drummer friend would come and visit and he texts me like when he left he texts me Jimmy Jimmy looked, sounded great. I'm like, okay, come back now, cause he's not, he doesn't sound great, he just he could show his show times for you and yeah but it's so.
Speaker 3:I hear things from my husband like um, you're going to be fine, you look great, you don't really have serious symptoms, you'll probably outlive me, and those things are fine. Those things are encouraged. I think he wants to be supportive in his own way. I think he wants to encourage me, and yet that's not my reality. I don't necessarily believe those things with my whole heart.
Speaker 1:He's in denial too, which is, you know. Again, it's a defense mechanism, for sure, perry. What about you?
Speaker 2:When they come up and tell me you don't look like you have dementia, I just say we're going to ask them what am I supposed to look like? And it pretty easily shuts them up dementia. I just say ask them what am I supposed to look like? That usually shuts them up.
Speaker 1:That's why we have that poster. We put up Faces of Dementia because there's no it doesn't discriminate. Did anybody think you weren't telling the truth or you were making stuff up in the beginning, Curry?
Speaker 2:Oh yeah, yeah, several people did. Family members thought so that's, I don't know.
Speaker 1:I think that's why I recorded things so much. Um, I recorded jim a lot so that when we went to the doctors and he showed time for the doctor you know, you know how it goes the doctor would do you have any more night terrors? Did you do this or that? And he's saying no, I'm fine. And I'm behind him in like shaking my head and yeah, it's, it's.
Speaker 1:That can be a very frustrating thing too, because even as a caregiver I'm like people will probably think I'm making this up because he can show time in front of people. You know, until his friend the drummer, his friend Ray the drummer mom had Alzheimer's and he gave me a. I wish I remember the title of the book that literally talked about show timing, because he said he felt like people thought he was making it up about his mom too. So yeah, it's not easy for sure. We knew this was going to be a longer episode, so we're going to stop it here for this week and we'll pick back up next week with part two of our conversation with Ro. So we'll be back with you next week.