Lewy Body Roller Coaster
Welcome to our podcast about living on the Lewy Body Dementia roller coaster- a podcast for Lewy Body Dementia patients and their families presented by Lewy Body patients and their families.You will hear firsthand, the ups and downs and twists and turns of Lewy Body Dementia from families directly affected as we will share our support and experiences on all things Lewy Body.lewybodyrollercoaster@gmail.com
Episodes
This week, Curry shares with us his and his wife Linda's experience going to a funeral home to plan their funerals in advance so their children did not have to later on. He shares how he felt during the process and why he wanted to share with our listeners and members of our Facebook pages.
"I would hate to have left Linda to decide all that in a day or two," Curry confesses, his voice carrying the weight of nine year...
This week is part three of a three part series. We decided to ask participants form one of our weekly zoom support meting if we could record the meeting and share with you all so you can hear how a meeting goes, what people share and how they share suggestions with one another for certain symptoms. We hope you can hear the love the people in this group have for one another. We all need to lean on one another on this Lewy journey bu...
This week is part two of a three part series. We decided to ask participants form one of our weekly zoom support meting if we could record the meeting and share with you all so you can hear how a meeting goes, what people share and how they share suggestions with one another for certain symptoms. We hope you can hear the love the people in this group have for one another. We all need to lean on one another on this Lewy journey but ...
This week is part one of a three part series. We decided to ask participants form one of our weekly zoom support meting if we could record the meeting and share with you all so you can hear how a meeting goes, what people share and how they share suggestions with one another for certain symptoms. We hope you can hear the love the people in this group have for one another. We all need to lean on one another on this Lewy journey but ...
The conversation takes a surprising turn as they detail a series of household disasters that would test anyone's resilience. A massive 90-foot tree fell onto their house during the night, damaging their electrical system during one of the coldest nights of the season. Combined with plumbing failures affecting both their kitchen and laundry facilities, they find themselves navigating a perfect storm of home maintenance crises w...
Welcome Vangie Jones, a hospice nurse for 20 years as she shares with us all we need to know about hospice including the myth that it is only for the final days or weeks. This will be a three part recording since we had so many questions for Vangie that we all want to know
A shout out to all our supporters including Tom Lawson, Dee C, Sue, Jane Wakeman,Vickie Setterberg, Kristen Medica, Tiffany Hanna, Janice Prochaska, Ka...
A tough topic but one we all need to know about sooner than later.
Welcome Vangie Jones, a hospice nurse for 20 years as she shares with us all we need to know about hospice including the myth that it is only for the final days or weeks. This will be a three part recording since we had so many questions for Vangie that we all want to know
A shout out to all our supporters including Tom Lawson, Dee C, Sue, Jane Wakema...
A tough topic but one we all need to know about sooner than later.
Welcome Vangie Jones, a hospice nurse for 20 years as she shares with us all we need to know about hospice including the myth that it is only for the final days or weeks. This will be a three part recording since we had so many questions for Vangie that we all want to know
This episode provides valuable insights into hospice and palliative care for fam...
This episode sheds light on navigating life with Lewy Body dementia, focusing on the importance of community support and personal stories. We share experiences about hospice care, the unpredictability of hallucinations, and the joy found in good days.
• The critical role of support networks for Lewy Body individuals
• Insights from hospice care experiences and advocacy need
• Navigating the challenges of hallucinat...
Welcome back for part three of our interview with
Dr. Todd Levine from CND LifeSciences to share with us all information about the new syn-one skin test that can help in diagnosing LBD.
Our good friend Wendy Cogan joined us to help ask the right questions so we get a better understanding of this new test.
This is a three part recording because our interview was well over an hour and a half but we had lots of questions ...
Welcome back to part two of our interview with
Dr. Todd Levine from CND LifeSciences to share with us all information about the new syn-one skin test that can help in diagnosing LBD.
Our good friend Wendy Cogan joined us to help ask the right questions so we get a better understanding of this new test.
This is a three part recording because our interview was well over an hour and a half but we had lots of questions to ...
Welcome back everyone.
This week we have a guest question helper as well as Dr. Todd Levine from CND LifeSciences to share with us all information about the new syn-one skin test that can help in diagnosing LBD.
Our good friend Wendy Cogan joined us to help ask the right questions so we get a better understanding of this new test.
This is a three part recording because our interview was well over an hour and a half but ...
How do you navigate the often confusing path to an accurate Lewy Body Dementia (LBD) diagnosis? This week we talk about what it’s like when Lewy gets ahold of you and many stories of how Lewy is misdiagnosed. We hope sharing these stories helps those seeking a diagnosis to better arm themselves with notes to take to the doctor as we unravel the complexities faced by those living with LBD and their caregivers.
A shout out ...
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 decad...
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 decad...
Welcome back Podcast Family!
This week we are sharing part three where some of those who were able to attend the Lewy Buddy Meet-Up in Caney Kansas on September 14, 2024 share how they felt meeting people they have only seen on zoom. For some, it was the first time they meet another person with Lewy Body Dementia in person. I know you will hear the Lewy Love shared by those who attended in Kansas. This needs to be in three part...
Welcome back Podcast Family!
This week we are sharing part two of three where some of those who were able to attend the Lewy Buddy Meet-Up in Caney Kansas on September 14, 2024 share how they felt meeting people they have only seen on zoom. For some, it was the first time they meet another person with Lewy Body Dementia in person. I know you will hear the Lewy Love shared by those who attended in Kansas. This needs to be in thr...
Welcome back Podcast Family!
This week we are sharing part one of three where some of those who were able to attend the Lewy Buddy Meet-Up in Caney Kansas on September 14, 2024 share how they felt meeting people they have only seen on zoom. For some, it was the first time they meet another person with Lewy Body Dementia in person. I know you will hear the Lewy Love shared by those who attended in Kansas. This needs to be in thr...
Welcome back!
Curry shares how his summer went with his LBD causing a few hospital stays. He also shares some important information about Hospice and Narcan Nasal Spray.
Four years ago we uploaded and published our first episode. It is just crazy that this will be our 138the episode and we are over 60K downloads so thank you all for your continued support and patience. Lewy sure has been a bugger to Curry this summer.
<...
Welcome back to part 2 with our friend Ray .
In this episode, we tackle the complexities of managing Lewy body dementia, from handling tremors and balance issues to dealing with unique symptoms like a persistent runny nose. Ray shares how activities like Rocksteady Boxing have been transformative for him. We also explore various remedies for those pesky muscle cramps, including some unconventional and amusing methods. You...
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