Lewy Body Roller Coaster

Welcome back Podcast Family! This week we share some helpful tips others have shared on things around LBD such as how to remove the adhesive for the  patches, tooth brushes, nose sprays to be aware of and medicines no one with LBD should use. Curry shares a little on how he is feeling and once again...we laugh as we try to get through an episode as we are clearly not tech savvy individuals but we...

Welcome Megan Ferguson-Koci  as she  shares her struggle getting diagnosed as a women in her 40’s and being told it’s just woman problems….sadly we have heard this from so many other women. She shares her journey and how she is staying positive. We are so very thankful she has become an integral part of our Lewy family as she helps us with the zoom meetings while Podcast Linda needs time grieving ...

This week, welcome Dr. Jason Cohen. Dr. Cohen is a dementia specialist who answered many of our burning questions about LBD. We are sure some of our questions to him are some each of you would have asked. He said he would come on again, so if anyone has other questions to ask, please email them to us at lewybodyrollercoaster@gmail.com Hearing his responses made us feel hope and he said everyone ne...

This week we welcome six individuals who attend at least one of our support group zoom meetings.  We wanted them to share with you all the power of attending a support group. Our hope is you hear from these amazing people and feel more comfortable joining in one of the meetings we hold each wee Naomi from Ireland mentions Lewy Love. That's what you will get when you attend one of our support...

We are back after a much needed break to handle many personal issues. Thank you all for your continued patience. Just as LBD is a roller coaster ride, so has been our lives been the last few months. A big shout out to all of our supporters. We couldn't do all this without your help and support. xo This episode, we do a quick recap of how this all got started..the podcast, our 5 support groups...

Podcast Linda is taking 2 weeks off for her birthday…so enjoy the replay of Lewy Terms Defined part 2 with  Dr. Sara . Just a reminder- we are not giving medical advice, merely sharing our experiences. This week, Sara returns to help us talk about the many terms you may hear that relate to some aspect of Lewy Body Dementia. When you listen, you will hear the technical definition of the terms and t...

Just a reminder- we are not giving medical advice, merely sharing our experiences. This week, Sara returns to help us talk about the many terms you may hear that relate to some aspect of Lewy Body Dementia. When you listen, you will hear the technical definition of the terms and then hear examples from personal experiences which helps us have a better understanding for each terms discussed. There...

Welcome Back Podcaast Family! This week, we share our thoughts on whether there are stages of LBD. There are so many different sites that speak of anywhere from 3-7 stages. We give our two cents on stages and then discuss what it was like for Podcast Linda with the Brain Foundation and Lewy research. We are doing this for all of us and we thank you from the bottom of our hearts. Should you wish to...

This week we continue part 2 as Curry shares how he is feeling and discussed the new hallucinations he is having and how he is feeling overall including not remembering visitors. We also discuss compulsive behaviors people with LBD may have as this was a big discussion during one of the zoom meetings. Should you wish to bless us with your support you can  use links below. Copy and paste link, if n...

This week Curry shares how he is feeling and discussed the new hallucinations he is having and how he is feeling overall including not remembering visitors. We also discuss compulsive behaviors people with LBD may have as this was a big discussion during one of the zoom meetings. Should you wish to bless us with your support you can  use links below. Copy and paste link, if needed https://patreon....

Hello Everyone! Thank you for your patience.  Curry shares this week how he has been on a decline for the last few months and shares, in details, how Lewy is affecting him right now. We have a  special appearance from his wife Linda as she helped him describe his current symptoms. Should you wish to bless us with your support you can  use links below. Copy and paste link, if needed https://patreon...

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 vo...

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...

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 on...

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 on...

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...

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 H...

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 p...

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, De...

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 challe...

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...

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...

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 neurod...

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...

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 neurod...