Lewy Body Roller Coaster
Lewy Body Roller Coaster
What Would You Want Dr. to Say?
This week we share comments from question posted in the groups on what you would have wanted the doctor who diagnosed you to tell you about LBD - more than to just get your affairs in order?
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Welcome back podcast family.
Speaker 2:Yes, welcome back y'all.
Speaker 1:And, as always, we want to thank all of you who have been patient with us, as we do our best to get an episode out each week, but we know sometimes Louie and life get in the way and we were pretty good there for I don't know six, seven weeks in the beginning. Our goal is to get caught up and ahead the best we can.
Speaker 2:Yes, and we always say that if it wasn't for all of you all, we may have stopped after the first few episodes Because, to be quite honest, for the two of us who knew nothing about doing a podcast and in all fairness, we still don't, but we have helpers it is a lot of planning but worth all of it if someone can learn from what we share or how we feel and they learn that they are not alone on this journey, how we feel and they learn that they're not alone on this journey. But we wanted to send a shout out to Andrew Zappullo this week for all he does editing the podcast for us each week.
Speaker 2:Before we start, I want to give a shout out to some of our supporters. This week we've got Fred Pounds, lana Badcock, pia Bedard, michelle Austin, lisa Seavers and all you other good folks who help keep us supported. Thank you all. Yep. Well folks, it's just me and Podcast Linda this week doing one of our podcast fireside chats.
Speaker 1:It's funny that we say I've got to look at all my buttons here. I mean, it's been three years now and we literally still don't know what we're doing. Because I'm serious, we should do. I keep saying we should do a bloopers roll, yeah, of what it's like on my end trying to get things working.
Speaker 1:Anyway, you know, kari and I wanted to talk about a topic that I posted in the groups a few weeks ago and I read, posted it yesterday, just to share other people's thoughts and after you listen, if you want to send us an email on you, weigh in or, you know, find the post on this and weigh in.
Speaker 1:And I think it's an important subject or topic that I think could help doctors a lot. So here's what I posted a few weeks ago For most diagnosed with Lewy body dementia, you were immediately told to get your affairs in order and that the doctor would see you again in six months and then left alone to digest what you were just told. Instead of this kind of treatment after a diagnosis of LBD, I posted a question what would you have wanted the doctor and his staffs to do to help you instead of just telling you to get your affairs in order? And I've shared several times before. This is what happened the day Jim was diagnosed although he was diagnosed with Alzheimer's, but it was still the same. Go see the social worker lady in this little tiny room. They gave me a folder with stuff in it that says get your affair in order.
Speaker 1:Basically, wow, you see all those typos good thing I'm not reading it anyway, good, good thing I'm not reading, but anyway, we went to the end of the hall, you know, and this girl, uh, gave us this information, um, to tell us to get our affairs in order, specifically, or will, um, and then see you in six months. So I wanted to know what would you have wanted the doctor and his staff to do after giving you that diagnosis?
Speaker 2:Yeah, we thought what we would do is we'd share with you some of the comments shared by others and then throw our two cents in. Remember, folks, we're not offering medical advice. We're just sharing among friends walking the same journey as we are.
Speaker 1:Yeah, so I also. We had Zoom yesterday, on a Monday, and I asked the people on the Zoom to also weigh in on their suggestions. So we have several that we're just going to read off to you and then we'll throw in what we think and then hopefully this helps, if anything hear suggestions from people and then when you go back to the doctors next say, hey, can you do this or can you help with that? So there were some really good suggestions, so I'll start. Someone said that I would like doctors and neurologists to tell people who do this or can you help with. You know that. So there were some really good suggestions, so I'll start. Someone said that I would like doctors and neurologists to tell people who are first diagnosed that they have lots of life to live, instead of focusing on the two to eight years of life that they usually tell you that, that you have left and you're living. Proof that that's not true because you're what are you? What year are you in now?
Speaker 2:oh, I'm going on my eighth right, you're still kicking yeah, yeah, yeah. We need to focus on what we can do instead of what we can't do, and the doctor should look us up, hook us up immediately with occupational therapy, physical therapy, so that we can be assessed to see what kind of aids we can utilize right then to help make our daily lives a better place.
Speaker 1:Yep, that's true, because usually people well, we'll talk about it at the end, but usually people that are diagnosed in the beginning wait until they're like you. You know you just recently started getting services when you can be getting them sooner. The next person had said there are so many tools that can help make our lives much easier and I'm living proof, as I've been living by myself for the past nine years but I wouldn't be able to do it if it wasn't for all the tools I've been taught by occupational therapists. And the next person said just explain it there again. A lot of people were saying this that there's still a lot of life left ahead of you. Good life left, as, curry, you always say. You just live it differently.
Speaker 2:Yeah, explain it in tales instead of saying don't go to the Internet and look stuff up until diagnosis Doctor was involved, but after the diagnosis just said don't look it up on the Internet.
Speaker 1:Yeah, this person was told not to look anything up on the Internet. Just here you are. You're diagnosed, get your fears and orders, see you in six months and don't look anything up on the Internet, right.
Speaker 2:And don't even anything up on the internet Right, and don't even ask me about that six-month thing? Yeah, and it's just it's not funny, but it's ridiculously, it's terrible.
Speaker 1:Yeah, I don't even know what the word is.
Speaker 2:How can they see you every six months for 15 or 20 minutes?
Speaker 1:Yeah.
Speaker 2:And help you with anything.
Speaker 1:They can't. Yeah, the next person had shared. I would like a doctor to say let's learn about this together, maybe share videos and notes that they can watch together, and for doctors to recognize that every single person diagnosed is different, because there's no two people with Lewy body with the same symptoms.
Speaker 2:Yeah, and this person said the first doctor said don't eat red meat and exercise big time. I have a problem with that right there, not eating red meat, but with the initial Parkinson's diagnosis. Then three months later, lewy body dementia diagnosis. If a time of diagnosis is general public, they need to be more aware of dementia, that's not just Alzheimer's.
Speaker 1:Yeah, so this person just clumped these three things together. But yeah, I mean, curry's going on these in year eight and he still eats his red meat that we all know. You betcha, that he does. Yeah, and you really do. Alzheimer's Association was very good at getting information out Too good in that whenever someone says dementia, they immediately think it's Alzheimer's.
Speaker 1:So, she has a point that the general public needs to be aware. There's more than just Alzheimer's. So someone else said tell us about the Lewy Body Demand and Resource Center that Norma Lowe does in New York, or the LBDA, and not just give us a list of numbers to call, which I remember there was a paper in there with all these numbers to call, I don't even remember what assistance. Like you can call this person for your will and you know literature, give some literature and say where you can go to get help, instead of someone's doctor saying don't go to the internet at all. This person said they have to do better.
Speaker 1:We are so desperate for answers about our health and then we get a stiff boot out the door. And this person said she got a voicemail message at 5 or 5 pm saying your test results a voicemail. It's almost as bad as what happened for me and Jim, but your test results indicated Alzheimer's with the presence of Lewy bodies, because I received an email four days later. Well, this person received an email four days later with the exact writing and then she said she was fine until she Googled Louie and she said what the blah, blah beep. When I had to say those words but had to wait the whole entire weekend to call and talk about this. Leave a diagnosis on an answering machine on Friday night and she said her chest just gets tight thinking about it. So that's not something you leave on a message.
Speaker 2:You know, that's how I was. I thought I was having a heart attack three different times, you know, before I was even diagnosed and I'd go to the hospital. You know, before I was even diagnosed and I'd go to the hospital and, oh, after 24 hours of waiting each time, you know, they'd say no, they'd say ah, you're a drinker or you're you know whatever, they didn't help at all. Yeah, this one says. When my sister-in-law was diagnosed with lung cancer, she was given a huge binder. It included advice for diet, chapters on what to do for all different kinds of things that can come up, resources to find good, reliable information. It was very comprehensive, but for me I got nothing like this.
Speaker 1:Yep, yep, and we're just sharing people's comments. It may sound well. You guys know us by now. That gets our goat up sometimes, as you would say, because we're frustrated, but I do believe, after three years and everybody that we hear from and everybody listening and people in our support groups, if we all just keep speaking up and sharing about it, it's going to get better. I feel like it has.
Speaker 2:I think we're working on it.
Speaker 1:Yeah, we hear more and more people getting earlier diagnosis, getting an early diagnosis and a lot of ways to go, but everybody just needs to keep working on it. So this one said we got the same as you, I guess referring to what Jim and I got to, and they're going to a top neurologist in one of our best hospital systems in the area. He did a thorough, the doctor did a thorough exam. But other than say, look online at Michael J Fox website and name a caregiver's group that meets over an hour away on a major highway, it was see you in four months. Now it's every six months. The disease impacts every second of every day in one way or another and I bet most with LBD go to a neurologist who specializes in Parkinson's, as we do. So it was just interesting to compile all these answers because they're all over the place. Kind of the same, but all over the place, if that makes sense.
Speaker 2:Yeah, it does, they sure are. This one says our doctor spends time and answers our questions but nothing really life-changing in any way of suggestions, and when you are told you have LBD, you don't even know what questions to ask at first.
Speaker 1:That's true. And you said you didn't even you thought it was lower body.
Speaker 2:Lower body. Dementia is what I thought he said.
Speaker 1:Yeah. Next person said I will say the neurologist I saw completely blew me off and said he didn't think it was louis and to come back and see him in a year he actually went back at some point after saying this, blowing her off and saying he doesn't think it's louis. He actually went back and changed in her chart after he blew her off and changed his diagnosis without telling her. Needless to say, we never went back to him. So they changed. He went in and changed the diagnosis to Louie buddy, because nowadays you can go access most hospitals I think everywhere. Now you can access your chart.
Speaker 1:Patient portal yeah, yeah, the patient portal. So, needless to say, we never went back to him. If you don't feel good about your doctor and that he or she is not taking you seriously and has your best interest in mind, find a new doctor, which we've said, which you know. Back in the day, we'd never think to hear people say fire your doctor. Right, you know, I would never think to hear people say fire your doctor.
Speaker 2:Right.
Speaker 1:You know. But again, I always say, if you look up a doctor and it says they specialize, and there's 10 things listed.
Speaker 2:Keep moving.
Speaker 1:I'm thinking all right, or at least if the 10 things were like Parkinson's dementia, you know, alzheimer's Lewy body, but if it's 10 different types of neurological things, not all related to a dementia.
Speaker 2:Keep moving. Yeah, this one says they need to have pamphlets about LBD. Someone has handed a Parkinson's handout and told doctor why don't you have one about LBD, Doctor? And she went to the waiting room and doctor saw there were none.
Speaker 1:Yeah, she's like. This is somebody from our group. She said she literally had the doctor come to the waiting room and say you know, you've got all these other brochures about Parkinson's, alzheimer's, but there's nothing out there about LBD.
Speaker 2:We can fix that problem.
Speaker 1:Yeah, yeah. Well, it's just it's got to come from an organization bigger than us, like LBD. Like how did Alzheimer's get all that information out to those neurologists? Like they must have a master list I'm assuming a master list of all the neurologists in the country. You know, maybe LBDA can do that and get something out. That was a great point. Get something out, that was a great point.
Speaker 1:And sometimes the doctors, which you know I've shared the story about when they made Jim go stand on a scale that was in a little alcove that used to be like where a water fountain would go and there was no light in there and they wanted him to get up on the scale and the scale that had the scale part was black and he he was terrified, he thought he was going to fall into a hole and I had to tell if you haven't listened to the episode I talked about that After we were done our appointment. I said to the doctor I'm like you really need a light out there or put fluorescent tape or something on that scale. I said because he thought the nurse was like come on, step up, step up, no, step up. And I'm like come on, step up, step up, no, step up and I'm like he thinks that's a hole in the ground. So and the doctor said to me I don't even know where the scale is, so doctors have to do better with that.
Speaker 1:Next person said I would have wanted the doctor to explain the disease to me and what it actually was. I did not like to have to Google it to get the information. I also would have liked for him to tell me that I have plenty of life left and to be encouraging instead of instead. He said I had menopause.
Speaker 2:Oh, I hate that.
Speaker 1:Yep.
Speaker 2:We see so much of that.
Speaker 1:Yeah, yep, and the next person shared that. Let the doctor know that there are support groups to attend, whether LBDA or Norma's Lewy Body Dementia Resource Center. Support groups for Lewy Body Because we were sent to. I went to an Alzheimer's one in the beginning and I can relate on several levels because everybody was like 80 and above the caregivers and they're not. They're two different beasts.
Speaker 2:And this person said I would like to hear the doctor say he will connect with me. I'm sorry he would connect with my other doctors and they all converse and make a plan for me.
Speaker 1:That's another thing. We always say, yeah, cancer, you've got a whole team.
Speaker 2:That's one reason I wasn't diagnosed until I was because my doctor said none of the doctors talked to each other. It was all right there in the notebook, but none of them ever talked to each other about it.
Speaker 1:And I think I'm assuming this is everywhere now because you know me moving from New Jersey to Pennsylvania, down to Louisiana and now back to Pennsylvania. I think they can access your records anywhere. Now At least it's getting to that point so that your doctor's all connecting, should that needs to happen, and then when they go in, when one doctor goes in to add notes, they're going to see everything else from the other doctors. The next person said someone was told now that she got diagnosed with LBD. Someone was told now that she got diagnosed with LBD that she didn't need any more colonoscopies or breast exams, like she was just given a death sentence. I don't now speechless.
Speaker 1:Someone shared that yesterday in our Zoom and I'm like what? That's, just like saying, oh, you might as well, not. It's so that one, I think, made flames come out my ears because that's just ridiculous on that one. And somebody else said there was Rosa literature on the wall in the doctor's office about every disease like diabetes, cancer, but nothing on LBD. Because that's a great way. You know, when you're bored in the waiting room waiting and you start looking for stuff to read and you just grab something on the wall. We need to get more LBD stuff posted for sure.
Speaker 2:This one says I want the doctor to say, hey, we're going to get through this together. It's not the best diagnosis, but also it's not the worst. And that doctor says they're going to help you have the best of life living with the disease. Yeah, yeah.
Speaker 1:I mean if any time you need.
Speaker 2:That would be great.
Speaker 1:Yeah, you need the doctor to hold your hand, so to speak, like walk this walk with you. The next one doctor's offices need to have a liaison from the office that you can contact at any time with questions. You know, through the portal questions for the doctor, but wouldn't it be great if there was someone separate there that you can contact with simple questions?
Speaker 2:Yeah, and Center of Excellence where all your doctors speak to each other and plan treatment. But they need to have a center of understanding of Lewy body dementia. Next one says doctors need to hear from us to allow them to understand lived experience. Narrow view of what LBD is and what LBD people should be doing, like saying you should be hallucinating or you aren't tremoring like you like Lewy body dementia people normally do.
Speaker 1:Next one ask the patient. Ask the patient what their understanding of dementia is, start there and then help them understand that there's more than one type. So, now that we've shared all that and there were more that were posted on this question and we reposted it yesterday, may 13th, but it's you know I really hope some doctors are listening to the podcast and listening so they can hear from other people what you guys would, what we all would have liked to hear when they get that diagnosis. So, now that we've shared all that, what would you have liked to hear when you were told?
Speaker 2:Me.
Speaker 1:Yeah, you.
Speaker 2:Well, I think my doctor did an excellent job telling us really. He did say we would talk about prognosis at a later date instead of that day, but you know, he sat there for over an hour reading each and every page in the booklet that Linda had put together with my medical records, and then he told me I had Lewy body dementia and he said you know, you'll never feel as good again as what you do today. Yeah, so that pretty much let me know what it was day. Yeah, so that pretty much let me know what it was. But he did leave it up to us to go home and Google and learn more about it, you know. But any questions we had, he was always ready to answer them.
Speaker 1:Yeah, but answer them at your next visit, right?
Speaker 2:Yeah, right, right, which. That time I was going there for 30 days.
Speaker 1:Yeah, but I mean having that like someone in the office doesn't have to be a doctor, doesn't even have to be a nurse, you know, a layperson even that could field the questions that you guys have and we all have in the very beginning, so that you're not waiting 30 days or six months to get your questions answered. Six months to get your questions answered. And, as you know, the reporters are there. But you see how busy the doctors are, that you don't want to burden them with so many questions. But I think if they had somebody that they could hire cheaper than a doctor just there to answer questions for people.
Speaker 2:Yeah, and one thing I liked is that we found out that one of the nurses that always helped us there at the doctor's office, her mother, was being treated by that doctor for Lewy body dementia. Yeah, we always had quite a bit to talk about.
Speaker 1:Yeah, Well, that helps. That's big and again I feel optimistic for the people coming behind us that the word's starting to get out. It's just the same I'm sure it was the same when Alzheimer's started to become the thing and the organization started. It's just taken a while and not everybody has a caregiver to do all that research for them and it can be overwhelming.
Speaker 2:They actually have come a long way. It's taken them several years, but like back when my grandmother was diagnosed with dementia as I always said dementia they didn't say it was Alzheimer's. They didn't say it was anything, because back then they just called it dementia and not too long after. That is when they started coming up with Alzheimer's Right.
Speaker 1:Yeah, I do think it's getting better. It's just taken a while and not, you know, I think it should start with general practitioners and work the way up to neurologists. You know, because you see your general practitioner more than specialty doctor most of the time.
Speaker 2:Yeah, and Lewy Body Dement. Dementia just does not get the dollars for research like Alzheimer's does.
Speaker 1:Yeah and I'm thinking the urgent cares and the emergency rooms, like start there, like start, basically really start there because they see so much coming in and we've heard so many stories where people are just treated with hallucinations, with medicines you're not supposed to take for louis you know, have you ever wondered, looking at homeless people, how many of them probably have louis?
Speaker 1:yeah and they well again. If they went into an er or something, they could could have been treated for hallucinations. Yeah, that were caused from louis, not not because they're all bipolar or anything like that. Yeah, it's, it's. We all have to start somewhere. So I think one of the main reasons I wanted to ask this question is, you know, and we always say for those behind us that they don't have to struggle so much getting a diagnosis, as a lot of people have had, and to help people behind us and hopefully, if there are any doctors listening, maybe next time you go to a conference, you know, share these ideas with or change your office procedures. Or have you know pamphlets in your office about LBD. You know, really get to know people and try to understand what people with Lewy body are going through. You know, and just as simple as that stupid scale, you know, having the black bottom in a place where it wasn't lit and Jim would thought it was a hole in the ground, just things like that. Like that's how people with Lewy can be helped.
Speaker 2:Have you seen the new books, booklets on Lewy Body Dementia that the National Institutes of Health puts out?
Speaker 1:No, I have not. Oh, the little ones, the brown ones.
Speaker 2:No, they took place to those.
Speaker 1:Oh, okay, I didn't know that.
Speaker 2:It's this color this year.
Speaker 1:Oh, that's great, yeah, so yeah a lot different. Yeah, the National Institute of Health and NIH. If you email, if you go to their website, you can ask them to send you books. It looks like it has more information too, that's the book that I took.
Speaker 2:They send you minimum 25.
Speaker 1:Yeah, yeah, but they used to be brown and they're for free. So if you go on Amazon and you can find it on Amazon and people are charging for them, which is wrong because you should be able to get them for free, that's the booklet that I carry with me to every doctor's office and gave every doctor the book gave the people in the ER. You know that whole ER experience, yeah. So there's a lot of stuff out that you can get for free too and ask them for enough to give to everybody in your family, you know.
Speaker 2:Yeah, and take some with you to your doctor's appointment and ask them if you can put them out in their lobby.
Speaker 1:That's a great idea. Yeah, we can be like the minions of getting and distributing.
Speaker 2:That's such a great idea. You can order as many of these as you want right now.
Speaker 1:Yeah, so if it's National Institute of Health, NIH because I know you can get some booklets from LBDA, but I think they've limited the number you can get now.
Speaker 2:Yeah, they have, and they're the same books that NIH puts out. They just get them from them.
Speaker 1:Yeah.
Speaker 2:But you can also get them from the Lewy Body Dementia Resource Center also.
Speaker 1:Yeah, yeah, that one for sure is for free. I thought it was important to share this one as a topic because we all kind of have been sharing the same kind of stories and we all just want to educate everybody else about what's going on. But thank you, Harry, my friend, it's important to be able to share with others who understand what it's like going through this disease. That's why we encourage people to join a virtual support group, whether you are a caregiver or a person diagnosed. So we hope you can join in one of our Zoom support meetings or join one near you. Most of them it's rare to find an in-person meeting places just on LBD. Most of them are on Alzheimer's. But one positive thing of COVID, I think there have become more online support groups.
Speaker 1:So, that's a good thing thing of.
Speaker 2:COVID, I think there have become more online support groups, so that's a good thing. Yes, you'll gain a whole new family and feel like our Irish friend says feel the Louis love in the support groups.
Speaker 1:Yeah, yeah, for sure, and I wanted to thank everyone.
Speaker 2:Don't take my line, mister. I was just going to explain our Irish friend.
Speaker 1:Oh yes, nami.
Speaker 2:Yeah, she's from Ireland, yep, and she joins us every Monday and Friday.
Speaker 1:She would on the Thursday one, but the time difference gets to her there, yep, and right now we think she's coming to the September Caney meetup, so that's going to be very exciting.
Speaker 2:Yes, she is.
Speaker 1:But anyway, I wanted to thank everyone who supports us and who have become members of our new Louis, our new members of our Louis family, because I just want you all to know and I'm honored to call you all my friends.
Speaker 2:You, betcha and folks. We keep getting more and more people and I don't know where they're all coming from, but we keep getting more and more people joining the Lewy Body Dementia Resource Group Facebook page and the Our Journey with Lewy Body Dementia Facebook page. I think it's cool, but on the other hand, I think, well, it's sad that people need these groups.
Speaker 1:Yeah because you know when you first get diagnosed, you want to try to consume as much information as you can about it, but it's just going to a place where people understand your language, because we all speak Lewy language now. It's just pretty powerful for sure.
Speaker 2:Yeah, have you looked at the numbers for the Lewy Body Resource?
Speaker 1:The roller coaster Roller coaster page, yet no. Yeah, I know, we're 1.9.
Speaker 2:Wow.
Speaker 1:Yeah, yeah Again, yeah, that's great but sad, but great yeah.
Speaker 2:But I just wanted to say thank you to all y'all joining us. Okay, really Okay, folks, we hope you've learned from what was shared this week and we hope to do this kind of sharing again in future episodes. And remember we want all of you to be a part of our podcast series and share your thoughts on topics you want us to hear about. We would love to hear your feedback. Send comments and suggestions to either our email, which is louisbodyrollercoaster at gmailcom, or on my Facebook page, called Our Journey with Louie Body Dimension.
Speaker 1:And the Louie Body Roller Coaster podcast Facebook page. Such a mouthful, Such a mouthful. And remember that we are doing this podcast for all of us and we really do appreciate that you tune in each week.
Speaker 2:Yeah, and I tell you, folks, we talk about the Zoom meetings a lot. I learn something from every Zoom meeting. Every time we have a Zoom meeting Mondays, thursdays and Fridays I walk away with another piece of got a patient that I didn't know before. It's just really, really weird. But thanks for joining us folks.
Speaker 1:Yep Until next week.
Speaker 2:this is Linda and Curry signing off.