Parkinson's Empowerment
In this podcast we hope to help to help people living with Parkinson disease remain active and maintain/maximize independence by listening to others share their Parkinson's journey, hearing from clinicians and specialists, and keeping up to date with the latest research and resources.
Parkinson's Empowerment
A Journey Through Lewy Body Dementia with Brooke and Rafael
Join our conversation with Brooke and Rafael as they recount their journey from the first signs of dementia to finding the right medical care. Their story is a testament to the power of early intervention and the importance of understanding complex symptoms, such as REM sleep disorder.
Through honest dialogue, Brooke and Rafael offer a wealth of insights into navigating the challenges of Lewy body dementia, from initial tests like the Montreal cognitive assessment to treatment options such as Aricept. Hear how they worked closely with their neurologist to reach an official diagnosis, and how they've managed to slow Rafael's cognitive decline. Whether you're a caregiver, family member, or someone living with dementia, this episode promises to illuminate the path forward with hope and understanding.
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Hello and welcome to today's podcast. I'm Robin Barclay and I'm here today with Brooke and her husband Rafael. Rafael has been diagnosed with Lewy body dementia and they are here today to share their story with us. So thank you very much to both of you for coming and being brave to share your experience, and I think this will help a lot of other people. I just wanted to talk first about the definition of Lewy body dementia, and this is from the Lewy body dementia association, which is a great resource. So people with dementia with Lewy bodies typically present with cognitive changes first in the early stages and then later develop more Parkinson's-like symptoms such as tremors or stiffness or slower movement, whereas in Parkinson's disease dementia the motor symptoms show up first and mild cognitive changes to severe can develop and years later can present as a Parkinson's disease dementia. So what were your initial experiences Like? What initially took you to the doctor?
Speaker 2:I don't remember what took us to the doctor, but I spoke of certain hallucinations. Okay and forgetfulness. Yeah, forgetfulness, okay and forgetfulness.
Speaker 1:Yeah, forgetfulness, okay yeah.
Speaker 3:That was the main driver and that was actually back in 2020 when he started having the cognitive memory problems and we went to see our primary care physician and she administered the Montreal assessment test and so, based on that assessment test, that was kind of the beginning of starting to document symptoms that he was having and the visual hallucinations were one of the first symptoms that he had.
Speaker 1:Interesting. Okay, what. What were some of the cognitive things Like? Were you just forgetting keys or were you forgetting, like simple things, that you normally would know, your daily routines?
Speaker 2:Names my own kids' names.
Speaker 1:Your own kids' names, okay.
Speaker 3:How to get places, yes, how to get places Directions Driving directions.
Speaker 1:Right, okay. So you were places Directions Driving directions Right, okay, because you were still driving.
Speaker 2:At the time I was still driving. The doctors told me not to drive, and wasn't that how it was?
Speaker 3:No, Actually, you voluntarily decided to stop driving. Oh, that's, which was. That's huge, that's huge.
Speaker 1:Not a lot of people, yeah, not a lot of people, yeah, yeah.
Speaker 3:But by that time I think there was enough um just not feeling confident in his reactions and his ability to get from point A to point B without confusion and frustration when you might feel like you're going to get lost, or something.
Speaker 1:That can be really scary. Yeah, yeah, okay, so your primary doctor did the Montreal cognitive assessment. Then you kind of gave her the you know, told her what was going on with the hallucinations, and then you then went to a neurologist.
Speaker 3:Actually, that same day that she did the assessment neurologist. Actually, that same day that she did the assessment, his score quote, unquote score was such that she recommended and we agreed with starting medication right away. So he started Aricept almost immediately after that. So he's been on Aricept since late 2020. Then we started working with a neurologist as we started to see some of the physical symptoms, because of course they need to rule out other causes for flat-footedness or stiffness. You know, is it something with the back? Is it something with the vertebrae? And so it was from 2020. To spring of 23. So probably 18 months till we got an official diagnosis of Lewy body dementia.
Speaker 1:Okay. So when you first started taking the Aricept, did you notice an improvement? Either of you.
Speaker 3:I don't know. I would say not necessarily an improvement, but at least a lack of continuing decline. So I think it kind of slowed it. It's definitely has slowed it down. Slowed down the cognitive decline part.
Speaker 1:Okay, good, what were. Are there any other symptoms? I know rigidity and stiffness were some of it. Right, you've had some back pain and some neck pain, anything else that?
Speaker 3:yeah, another hallmark of Lewy body dementia is REM is REM sleep disorder, where they will act out their dreams or talk in their sleep, walk in their sleep, and that was something that I noticed because Rafael had never done that in the past and he would be talking in both English and Spanish in his sleep and not really having any memory of that occurring. He's never fallen out of bed which apparently is another hallmark sign of REM sleep disorder or sleepwalked, but definitely plays volleyball Sometimes I know it's baseball, the hands will get moving and that's. It can become dangerous for certain people if they are really acting out what could be a violent dream, but we certainly have not had any of that trouble. But we are working with a sleep specialist, actually, and have for a long time, because he also has sleep apnea. So our sleep disorder doctor is completely in the loop and watching and asking where he is in terms of acting out his dreams and his, his moods, all right?
Speaker 1:And just to clarify a few things you're bilingual, right, raphael? So you might not just all of a sudden start talking and speaking in a different language when you're sleeping, maybe. And you also are very athletic. You played volleyball, you play baseball. Okay, I did want to ask you about. You said you go to a sleep specialist.
Speaker 3:So the sleep specialist we work with is a neurologist who's got specialized training in sleep disorders. I don't think all neurologists have a. You know, just a regular neurologist may not address sleep disorders. They're aware of it when it comes to Lewy body dementia, but it's not really in their boathouse.
Speaker 3:So seeing a specialist for sleep disorders is really important because they also address medications, since medications can impact the quality of your sleep, since medications can impact the quality of your sleep. And we've recently made a change to one of his medications that can exacerbate the hallucinations and the REM sleep disorder, and I actually do think that change, which has been almost eight weeks now, has made a big difference. Originally he was put on denepazil, which was to help with some mood disorder, but it can also impact the REM sleep disorder, so now they've switched him over to fluoxetine, which is in the same classification of drugs but has a lower impact on the sleep quality, and I do think that has really made a difference for him the sleep quality and I do think that has really made a difference for him.
Speaker 1:Okay, good, something for people to be aware of and maybe you know everybody's situation is different, but to talk to their you know neurologist about yeah, okay, and there were, so you talked a little bit about the team that you're working with.
Speaker 3:We have a at least five regular five to seven regular people that we work with. Our primary care physician is our point person who really has taken the lead in making sure that she gets all the information from every specialist that he sees. But he sees a neurologist, an endocrinologist, a cardiologist, a physical therapist and a chiropractor and hopefully soon a speech therapist. So it really does take a team, a village, to help keep things on track, because the goal, I think, is really to just maintain status quo as long as possible and quality of life for as long as we can.
Speaker 1:Right and communication between that team is huge, yeah. And then I think you were going to talk about some other symptoms, some of the autonomic symptoms that you Right, yes, so Lewy, body dementia can really be impacted, can really impact your autonomic system.
Speaker 3:For Rafael it's been his blood pressure and that has taken a bit of work with his cardiologist and his endocrinologist to try to get that under control. He has a history of high blood pressure so he's been on medications but it was causing his blood pressure to drop too low and he was having lots of dizziness and we had some falls because of it. So they made some decreases in his medication. We are now at a point where they have eliminated medication and changed another medication and his blood pressure is much more under control. And his blood pressure is much more under control. The dizziness where he would go a week having dizziness every day has definitely decreased. So again, it's so important to talk to your doctor about what symptoms you're having, even if you've brought it up before, because if it hasn't changed then it still needs to be addressed. And sometimes it's not just one doctor. You might have to bring it up to both a cardiologist and your primary care because they may have differing perspectives on how to how to deal with it.
Speaker 1:Right, and definitely your neurologist. You know it's again like you said it's a team that needs to work together. Okay, do you want to share what, everything you guys are doing now to help? I know we talked about medication. What are you doing to other things? Are you doing to help combat the Lewy body or to slow the progression?
Speaker 3:Well, the biggest thing the neurologist has said when we've asked what can we do? It's exercise, it's movement, it's keeping moving, because that keeps the blood flowing, that keeps oxygen going to the brain. So the more that you can move and keep your body going, that's the best thing that he has said, because there is no medication that's going to cure this, there's no medication that will put it in remission. That's going to cure this. There's no medication that will put it in remission. So you have to take it upon yourself to keep moving. So social is huge. Isolation is bad. So coming to safe at home PT is as much about the social aspect as it is about the movement.
Speaker 2:Very true. That's one of the things that I enjoy coming here. Do you have fun here? I have a great time here. Even with pain and all of that, I still have a great time here. I come out of here with a smile on my face good and we love to see your smile, raphael.
Speaker 1:Yeah, so we got you doing. You're doing your PT, you're doing the rocksteady boxing here and you're doing our PWR moves class, which is a functional fitness class. So you're doing all the right things and you're walking. You got your walking poles that you're using. You're doing all the exercise. Exercise is medicine, right?
Speaker 3:Movement is medicine, medicine.
Speaker 1:You got it All right, you guys. Thank you so much for coming, and maybe we'll have to do a part two, because there's a lot more we can talk about, right.
Speaker 3:Absolutely. We'd love to Sure, not a problem.
Speaker 1:Okay, guys, thanks for coming. Have a great day.