Lewy Body Roller Coaster: Recent Episodes
Linda and Curry
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
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 three parts because we recorded our first zoom meeting after the event and we wanted to give each person the opportunity to share how the meet-up made them feel.
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
Support the show
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.
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
Support the show
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'll leave with practical advice, heartfelt stories, and maybe even a new trick or two to try out. Join us for an episode filled with wisdom, community spirit, and a touch of humor.
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
Support the Show.
Welcome Ray this week.
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'll leave with practical advice, heartfelt stories, and maybe even a new trick or two to try out. Join us for an episode filled with wisdom, community spirit, and a touch of humor. 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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
Support the Show.
Have you ever wondered about the hidden cognitive risks tied to everyday medical procedures? Listen to our latest episode featuring Jackie Babcock-Brown, who shares her powerful journey with Lewy Body Dementia. Diagnosed at just 55, Jackie recounts how a routine colonoscopy unexpectedly led to severe cognitive complications, unraveling into a sudden and dramatic onset of Lewy Body symptoms. We emphasize the critical importance of being informed about the potential cognitive impacts of anesthesia, especially for those with pre-existing neurological conditions.
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
Support the Show.
This week, Curry and I share about REM Sleep Disorder and the importance of having your loved on video tape your sleep patterns.
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
Support the Show.
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?
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
Support the Show.
Welcome back to the fold, where the tapestry of human experience is rich and complex, especially when joined by individuals like Carl Ladd, an award-winning educator who's bravely navigating through the turbid waters of Lewy Body Dementia. With laughter and vulnerability, Carl peels back the layers of his life to reveal the onset of severe depression and other debilitating symptoms that came with his diagnosis, challenging his once high-energy existence. His story is a stark reminder that success on paper doesn't shield us from the battles within, and it's a journey we're honored to share with you, filled with the truths of walking the tightrope between professional demands and personal health.
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
Support the Show.
Welcome back to the fold, where the tapestry of human experience is rich and complex, especially when joined by individuals like Carl Ladd, an award-winning educator who's bravely navigating through the turbid waters of Lewy Body Dementia. With laughter and vulnerability, Carl peels back the layers of his life to reveal the onset of severe depression and other debilitating symptoms that came with his diagnosis, challenging his once high-energy existence. His story is a stark reminder that success on paper doesn't shield us from the battles within, and it's a journey we're honored to share with you, filled with the truths of walking the tightrope between professional demands and personal health.
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
Support the show
Welcome back! This week, Curry shares with us about his recent medical it and how he is moving forward with his medicine and health care. Curry shares that the doctor signed him up for hospice and describes all that they are going to do to help him and his wife Linda now.
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
Support the show
Welcome back everyone!
This week, we wanted to share about the Lewy Buddy and Cargiver Meet-Up happening September 14, 2024 in Caney Kansas.
Gather 'round the warmth of our virtual fireside, as Linda and I, in a rare moment of quiet reflection, express our heartfelt thanks to you, our dedicated listeners. We're thrilled to extend an invitation to our first annual Lewy Buddies and Caregivers Meetup in Caney, Kansas, a beacon of connection and support in the tempest of Lewy Body Dementia. As we navigate the ebb and flow of this condition together, we welcome your stories and insights, bolstering our mission to educate and unite.You will hear all the details on this event first.
And then , Curry share about his newest Lewy dip and what symptoms he has been experiencing.
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
Support the show
Bill from Central Texas never foresaw becoming an expert in resilience and caregiving, but life's unpredictable turns have made him just that. As he opens up about his and Linda's encounters with Lewy Body Dementia, you'll find yourself moved by their tale of love, challenge, and unwavering commitment. Their story is a beacon of inspiration, guiding us through the murky waters of diagnosis and daily care.
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
Support the show
Welcome back to the podcast Sam and Tracie. Sam has LBD and shares his path to diagnosis. Tracie shares some great caregiver tips. Sam shares helpful uplifting ways he deals with his diagnosis and as Curry says...lives his best life.
A big shout out to all of our supporters!!
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
Support the show
Welcome to the podcast Sam and Tracie. Sam has LBD and shares his path to diagnosis. Tracie shares some great caregiver tips. Sam shares helpful uplifting ways he deals with his diagnosis and as Curry says...lives his best life.
A big shout out to all of our supporters!!
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
Support the show
When Miriam Owens bravely faced her diagnosis of Lewy body dementia at 54, it was a stark reminder that our health can take unexpected turns. Her story, rich with challenges and resilience, is the centerpiece of our latest episode, offering insights into the nuances of living with early-onset dementia. Join us as Miriam opens up about the changes she's navigated, the importance of advocating for oneself in the healthcare journey, and the empowering role support groups play in fostering community for those affected by LBD.
A big shout out to all of our supporters!!
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
Support the show
Welcome back! This week, it's just the two of us as we share some helpful comments on a few questions raised in the groups.... One of our fireside chats as Curry likes to call them. We discuss show timing versus fluctuations, how to deal with hallucinations and a few other topics.
We know everyone can't always see all the facebook comments and questions and some people don't even use Facebook so we wanted to share a few topics that have been talked about a lot recently.
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
Support the show
Part 2
Welcome back to the podcast, Teepa Snow! This time we wanted Teepa to come on and share all she has been up to as well as share all the ways you all can access her information. She discusses her PAC- Positive Approach to Care, her Teepa Talks, YouTube and more. We love partnering with her to bring educational information to you all. Enjoy this two part recording..we were having too much fun talking and sharing that it went longer tan we expected so we had to break into two parts but, and we hope you enjoy listening to this two part conversation.
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
Welcome back to the podcast, Teepa Snow! This time we wanted Teepa to come on and share all she has been up to as well as share all the ways you all can access her information. She discusses her PAC- Positive Approach to Care, her Teepa Talks, YouTube and more. We love partnering with her to bring educational information to you all. Enjoy this two part recording..we were having too much fun talking and sharing that it went longer tan we expected so we had to break into two parts but, and we hope you enjoy listening to this two part conversation.
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com 5
Support the show
Welcome to 2024!
This week, it's just Podcast Linda and Curry with a fireside chat. Curry's Lewy symptoms have been pretty bad the last three weeks or so and he wanted to share. We discuss how he has gone over 34 hours without sleep , internal tremors and scary hallucinations. As always, Curry tries to be as strong as he can be and wants to "ride it out" as he shares he has done many times before. It is just amazing how this disease truly has so many ups and downs and that no two people with LBD have same symptoms
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com 5
Support the show
This week its just Podcast Linda reading a poem written by one of our members, Rick Phelps. Rick wrote this poem in 2016 and gave us permission to share ith our listeners.
It really gives insight from someone with LBD and how he and many feel.
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
This week we wanted to take a few minutes to update y'all on how we are doing. Curry's hallucinations have come back but he explains this has happened before and he was overstimulated with many visitors over the last 2-3 weeks so that is one factor that triggered his hallucinations. One thing he unfortunately got to see that was NOT a hallucination was the alien trying to come out of Podcast Linda's stomach. Quite a tale we have to share on that crazy yet scary experience.
We so appreciate all the well wishes you continue to send us and support us in doing this podcast. Even when we just have our fire side chat where we tell y'all about how Curry is feeling and how he copes.
We appreciate each and every one of you more than you know. xo
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
Welcome Antionio and Barb G. This week, Antoni and Barb share with us their journey to diagnosis and beyond. They openly share some of Antonio's symptoms and then Antonio shares how he still lives a good life even with LBD. Very heartwarming interview with two amazing people.
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
Welcome care partner Chris Gungor. We get to hear a male care partner's perspective as he cares for his love- Jamie Sue. Chris shares with us Jamie Sue's journey to get diagnosed and how they both manage her symptoms now. He also shares many helpful hints for other caregivers.
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
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 needs to share about their LBD experiences because the more we all share, tjhe more people will know what the disease is.
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
This week welcome Tom and Dorie. Both Tom and Dorie discuss the symptoms Tom had that prompted a doctor visit. Tom shares with us how he overcame denial after being diagnosed. They both share with us how they feel about attending the support meetings and all they gain from attending the meetings. You will come to love them as much as all of us in the support meetings do.
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
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 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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
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 the last few months.
A big shout out to all out 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, 2 Facebook support pages and now a LBD awareness documentary.
We share with you all what we have been involved in over the past year or so that many of you may now be aware of. We have been working with a film crew on a documentary about those with LBD and their caregivers. Now that the film is close to completion, we thought now is the perfect time to share more details with y'all.
Welcome this week, the producer and director of the documentary we have been working on titled Facing the Wind. -Tony Heriza and Diedre Fishel.
The four of us share more details about the film and what it was like to be a part of this project.
Please consider watching the documentary trailer ( link below) and clink on the donate button to help get it over the finish line. No amount is too small.
Go to: Facingthewindfilm.com or click on link below.
https://facingthewindfilm.com/
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/c416ecb6
Thank you for listening.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
This week we talk about bathroom related issues- specifically peeing and how to help your loved one hit the bowl. We share a lot of great suggestions from listeners and members of our support group pages that we hope will help you or your loved one deal with some Lewy issues around the bathroom.
We thank you all for your continued patience during the last months as Podcast Linda navigates life after the passing of her husband and Curry makes a few bigs moves. xo
A shout out to all our supporters Carl Ladd, Eileen McGarity, Karen Wright and to all of our supporters. xo
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
Welcome back Podcast Family. Curry and Linda have had very busy months and share news about big moves! Curry also shares with us how he has found a new freedom using his Jazzy chair and how it has changed his life for the better. Podcast Linda shares news about a big move coming but, also share some important advice for spouses and caregivers about what to do now and not put off.
We thank you all for your continued patience during the last months as Podcast Linda navigates life after the passing of her husband and Curry makes a few bigs moves. xo
A shout out to all our supporters Carl Ladd, Lori Reiner, Beverly Weber and to all of our supporters. xo
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
This week Curry shares with us about his big move from Texas to Kansas and how all that made him feel. He also shares about his new fun mobile that has him scooting all around his new town...but we share ideas on how to make him and anyone with LBD safer to be out on their own.
A shout out to all our supporters Beverly Weber, Lori Reiner, Antonio and Barb Garcia.
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
We shared a link in the fb groups about a new study on how walking patterns differentiate the types of dementia from Medical News Today.We wanted to share some highlights with you for you to share with your doctors.
The causes of dementia can damage the brain in different ways. Is it possible that these differences may reveal themselves in the way that people walk? A new study that compared walking patterns in people with two types of dementia explored the question.
We discuss how the study was performed and the initial results.
A shout out to all our supporters Cindy Hansen, Wendy Cogan, Deb Telem and Jill Lehrke.
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
This week, we share information about a specific question someone asked in the group that got a lot of comments..helpful comments! This is the power of our support pages, people feel they can ask anything about living with LBD and so many of our wonderful members share their experiences. A special shout out to Gillian. We also talk a bit about how each of us is feeling and coping.
A shout out to all out supporters including Vickie Setterberg, Antonio and Barb Garcia, Lori Reiner, Timothy Perkins, Jonilyn Bennett and Cindy and Darrel Phillips. xo
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
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 the loss of her husband.
We couldn’t do all we do without the help from those with LBD and their caregivers. So, thank you to everyone who has been helping with the meetings, the Fb support pages and the podcast.
We are all in this together. Xo
A shout out to all out supporters including Vickie Setterberg, Kristen Medica, Tiffany Hanna, Janice Prochaska, Kara Biller, Don Pinkos, Dee Richert, Marcia Treffman, The Geraci's and everyone else who has been with us from day one.
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
Welcome to 2023!
This week, Curry shares with us how he has been feeling and a few new symptoms and what he is doing about them.
But....I, Podcast Linda, want to talk you all for your patience as I deal with my husband's passing which was so unexpected . It is hard for me to record again, but we want to keep sharing so I will do my best to start recording every week for ya'll.
A shout out to all out supporters including Vickie Setterberg, Kristen Medica, Tiffany Hanna, Janice Prochaska, Kara Biller, Don Pinkos, Dee Richert, Marcia Treffman, The Geraci's and everyone else who has been with us from day one.
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
Welcome back for part 2 I ,(Podcast Linda), share my story on the final weeks of my husband's journey with LBD. It was a very hard episode to record and very emotional as we are sure you all understand. We hope listening to my story helps those still on the journey realize life is too short and we need to do what we want and need to do now and not put anything off. Please accept my apology for being so emotional during the recording but I really needed to share and hope my advice during this two -part episode is helpful for those still on the journey.
A shout out to all our new supporters: Cindy Hansen, Lisa and Dick Landry, Gina Delaney, Arlene Roman and all our continued supporters including Tom Lawson, Dee C, Sue, Jane Wakeman, Vickie Setterberg, Dee Reichert, Marcia Treffman, and the Geraci's and everyone else who has been with us from day one.
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
This week and next, I (Podcast Linda) share my story on the final weeks of my husband's journey with LBD. It was a very hard episode to record and very emotional as we are sure you all understand. We hope listening to my story helps those still on the journey realize life is too short and we need to do what we want and need to do now and not put anything off. Please accept my apology for being so emotional during the recording but I really needed to share and hope my advice during this two -part episode is helpful for those still on the journey.
A shout out to all our new supporters: Cindy Hansen, Lisa and Dick Landry, Gina Delaney, Arlene Roman and all our continued supporters including Tom Lawson, Dee C, Sue, Jane Wakeman, Vickie Setterberg, Dee Reichert, Marcia Treffman, and the Geraci's and everyone else who has been with us from day one.
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
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, Kara Biller, Don Pinkos, Dee Richert, Marcia Treffman, and the Geraci's and everyone else who has been with us from day one.
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
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 Wakeman,Vickie Setterberg, Kristen Medica, Tiffany Hanna, Janice Prochaska, Kara Biller, Don Pinkos, Dee Richert, Marcia Treffman, and the Geraci's and everyone else who has been with us from day one.
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 you can use links below.
Support the show
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 Wakeman,Vickie Setterberg, Kristen Medica, Tiffany Hanna, Janice Prochaska, Kara Biller, Don Pinkos, Dee Richert, Marcia Treffman, and the Geraci's and everyone else who has been with us from day one.
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
Welcome Patti who shares with us what a doula is and how a doula can help those with Lewy Body Dementia. This is a two part recording.
Doula Links:
lifespandoulas.com/end-of-life-doula-directory
inelda.org/find-a-doula/
A shout out to all our supporters including Arlene Roman,Tom Lawson, Dee C, Sue, Jane Wakeman, Vickie Setterberg, Kristen Medica, Tiffany Hanna, Janice Prochaska, Kara Biller, Don Pinkos, Dee Richert, Marcia Treffman, and the Geraci's and everyone else who has been with us from day one.
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
Welcome Patti who shares with us what a doula is and how a doula can help those with Lewy Body Dementia. This is a two part recording.
A shout out to all our supporters including Arlene Roman, Tom Lawson, Dee C, Sue, Jane Wakeman, Vickie Setterberg, Kristen Medica, Tiffany Hanna, Janice Prochaska, Kara Biller, Don Pinkos, Dee Richert, Marcia Treffman, and the Geraci's and everyone else who has been with us from day one.
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
Part 2: Welcome back Bonnie Weber as she bravely shares her recent loss of her husband Randy who had LBD. She shares important information on her experience of needing to call hospice and what she wish she knew and wanted us all to know. I am in awe of her courage and strength through the rapid decline Randy experienced. Please keep her in your thoughts and prayers during this difficult time. Thank you Bonnie for being strong enough to think of others in this time and wanting to share what you learned to help others.
A shout out to all our supporters including Tom Lawson, Dee C, Sue, Jane Wakeman, Vickie Setterberg, Kristen Medica, Tiffany Hanna, Janice Prochaska, Kara Biller, Don Pinkos, Dee Richert, Marcia Treffman, and the Geraci's and everyone else who has been with us from day one.
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
Welcome back Bonnie Weber as she bravely shares her recent loss of her husband Randy who had LBD. She shares important information on her experience of needing to call hospice and what she wish she knew and wanted us all to know. I am in awe of her courage and strength through the rapid decline Randy experienced. Please keep her in your thoughts and prayers during this difficult time. Thank you Bonnie for being strong enough to think of others in this time and wanting to share what you learned to help others.
A shout out to all our supporters including Tom Lawson, Dee C, Sue, Jane Wakeman, Vickie Setterberg, Kristen Medica, Tiffany Hanna, Janice Prochaska, Kara Biller, Don Pinkos, Dee Richert, Marcia Treffman, and the Geraci's and everyone else who has been with us from day one.
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
Welcome back Podcast Family!
This week I asked Curry to share with us how he has been feeling over the last several week and how he has coped with each symptom.
We also shared some personal stuff about depression and leaning on others especially those you meet in our support zoom meetings or on one of the support pages on FB because everyone living through this journey needs others to lean on.
A shout out to all our supporters including Tom Lawson, Dee C, Sue, Jane Wakeman,Vickie Setterberg, Kristen Medica, Tiffany Hanna, Janice Prochaska, Kara Biller, Don Pinkos, Dee Richert, Marcia Treffman, and the Geraci's and everyone else who has been with us from day one.
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
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 then hear examples from personal experiences which helps us have a better understanding for each terms discussed. There were so many terms many of you sent me to discuss that we needed to break her recording into 2 parts. This is definitely our most educational episode and one you won't want to miss and hear.
Should you wish to bless us with your support you can go to:
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page athttps://gofund.me/c416ecb6
**Patron Shout Out
A very special shout out to Miriam and Matthew Geraci and Phyllis Banks for being super monthly patrons**
- Bronze
Amy
Sarah Szypula
Matthew Szypula
Andrew Szypula
Polina Dineva
Ginger Gillmore
Tedd Winkler
Ryan Samuel
Gillian Thompson
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
Karen Klink
Rita McCord
Kathy Deschenaeau
- Gold Patrons
Sharon Welch
Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
Pat Crawford
Belinda Ray
Cherie Lawrence
Linda Bolbecker
Daisy Best
Sara Langer
Larry Herig
Brian and Amy Dougherty Platinum Patrons
Darlene Passmore-Armstrong
**Thomas Connelly
Pat Crawford
Tere Wisell
Robin Lavaron
Alisa Mahoney
Albert Ferraro and Family
Norma Loeb
Super Patrons. Miriam and Matthew Geraci**
Go Fund Me Shout Outs
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather and Lewis Grossit
Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan
Susan Lavoice
LJean Howell
Marcia Treffman
Tedde Hope Hamilton
Geri Sera
Melinda Farmer
Michaele Couch
Pia Bedard
Russell Lebovitz
Nancy Guerro
Taylor SwantekThank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
Podcast Linda taking 2 weeks off for her birthday so enjoy the replay of Lewy Terms Defined part 1 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 then hear examples from personal experiences which helps us have a better understanding for each terms discussed. There were so many terms many of you sent me to discuss that we needed to break her recording into 2 parts. This is definitely our most educational episode and one you won't want to miss and hear.
Should you wish to bless us with your support you can go to:
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page athttps://gofund.me/c416ecb6
**Patron Shout Out
A very special shout out to Miriam and Matthew Geraci and Phyllis Banks for being super monthly patrons**
- Bronze
Amy
Sarah Szypula
Matthew Szypula
Andrew Szypula
Polina Dineva
Ginger Gillmore
Tedd Winkler
Ryan Samuel
Gillian Thompson
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
Karen Klink
Rita McCord
Kathy Deschenaeau
- Gold Patrons
Sharon Welch
Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
Pat Crawford
Belinda Ray
Cherie Lawrence
Linda Bolbecker
Daisy Best
Sara Langer
Larry Herig
Brian and Amy Dougherty Platinum Patrons
Darlene Passmore-Armstrong
**Thomas Connelly
Pat Crawford
Tere Wisell
Robin Lavaron
Alisa Mahoney
Albert Ferraro and Family
Norma Loeb
Super Patrons. Miriam and Matthew Geraci**
Go Fund Me Shout Outs
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather and Lewis Grossit
Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan
Susan Lavoice
LJean Howell
Marcia Treffman
Tedde Hope Hamilton
Geri Sera
Melinda Farmer
Michaele Couch
Pia Bedard
Russell Lebovitz
Nancy Guerro
Taylor SwantekThank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
Welcome back Anne Scott form across the pond as she shares with us about the two books she wrote for children to better understand what someone with dementia is going through. Sizzling Bacon and Sizzling Bacon and the Bee are available now. We encourage everyone to get them and share with your children and even adults and then donate to a school library.
It is among that Anne took her diagnosis and made something positive to help others.
Well done Anne!
A shout out to all out supporters including Sue, Jane Wakeman,Vickie Setterberg, Kristen Medica, Tiffany Hanna, Janice Prochaska, Kara Biller, Don Pinkos, Dee Richert, Marcia Treffman, and the Geraci's and everyone else who has been with us from day one.
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
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 to ask the doctor.
Enjoy part three
Link for CNDLifeSciences is
https://cndlifesciences.com/
A shout out to all out supporters including Vickie Setterberg, Kristen Medica, Tiffany Hanna, Janice Prochaska, Kara Biller, Don Pinkos, Dee Richert, Marcia Treffman, The Geraci's and everyone else who has been with us from day one.
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
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 ask the doctor.
Enjoy part two
Link for CNDLifeSciences is
https://cndlifesciences.com/
A shout out to all out supporters including Vickie Setterberg, Kristen Medica, Tiffany Hanna, Janice Prochaska, Kara Biller, Don Pinkos, Dee Richert, Marcia Treffman, The Geraci's and everyone else who has been with us from day one.
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
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 we had lots of questions to ask the doctor.
Enjoy part one
Link for CNDLifeSciences is
https://cndlifesciences.com/
A shout out to all out supporters including Vickie Setterberg, Kristen Medica, Tiffany Hanna, Janice Prochaska, Kara Biller, Don Pinkos, Dee Richert, Marcia Treffman, The Geraci's and everyone else who has been with us from day one.
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
Welcome back podcast family….
This week, I let Curry share how he is feeling and how his 90 day doctor appointment went as he shares the hurdles of life with Lewy.
A shout out to all out supporters including Vickie Setterberg, Kristen Medica, Tiffany Hanna, Janice Prochaska, Kara Biller, Don Pinkos, Dee Richert, Marcia Treffman, The Geraci's and everyone else who has been with us from day one.
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
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 love that you all are so patient with us each week as we "try" our best to get an episode off for every Wednesday but sometimes life and that dang Lewy shows up and causes some delay.
A shout out to all out supporters including Vickie Setterberg, Kristen Medica, Tiffany Hanna, Janice Prochaska, Kara Biller, Don Pinkos, Dee Richert, Marcia Treffman, The Geraci's and everyone else who has been with us from day one.
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
This week, our dear Curry shares with us how Lewy has been causing him some pretty strange symptoms other than messing with his sleep. He is so humble abut sharing his journey with LBD and we hope when he and others share that it helps people feel they are not alone on this journey. We discuss the ups and downs of LBD as we share comments from others having similar problems.
A shout out to all out supporters including Vickie Setterberg, Kristen Medica, Tiffany Hanna, Janice Prochaska, Kara Biller, Don Pinkos, Dee Richert, Marcia Treffman, The Geraci's and everyone else who has been with us from day one.
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
Welcome back podcast family!
This week we share news of our newest support group meeting scheduled for Saturday's at 6 p.m. CST for ANY caregiver. The link for this support meeting and all other support meetings can be found under announcements on the LBRC podcast page and the Our Journey with Lewy Body page.
We also talk about when and how to tell family and friends about a diagnosis as well as some helpful tips and suggestions for what to do if you have a fear of your loved one who may get aggravated when Lewy shows his ugly head.
A shout out to all out supporters including Megan Ferguson-Koci, Sam and Tracie Shields, Carol McNally, Dee Richert, Marcia Treffman, The Geraci's and everyone else who has been with us from day one.
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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
Welcome back the gals from across the pond as they share with us their involvement with Deepness Dementia Media. They also discuss how getting involved is crucial for those who get a dementia diagnosis.
A shout out to all out supporters including Melody Engle, Carol McNally, Dee Richert, Marcia Treffman, The Geraci's and everyone else who has been with us from day one. 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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
Welcome Anne and Julie from across the pond. This is a part one of two recordings with them. This week, they introduce themselves and share their journeys thus far and how they each did not take their diagnosis sitting down and got involved. Next week, they share with their involvement with Deepness Dementia Media.
A shout out to all out supporters including Melody Engle, Carol McNally, Dee Richert, Marcia Treffman, The Geraci's and everyone else who has been with us from day one. 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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
This was a tough episode for us because one of our member's is dealing with a suicide in his family but we wanted to share how our last zoom support meeting went when this person came in and shared. Please know you are never alone on this journey and we are just a text message away to talk. We can be reached through Facebook messenger any time of the day no matter the hour. If you are in the US, we have 1.800 helplines but if you are listening from another country, please search for your suicide helpline. We are all in this together and need to lean on one another especially during times of tragedy. Sending our love to our dear friend who lost his child this past weekend.
In the USA: National Suicide Prevention Lifeline
Hours: Available 24 hours. Languages: English, Spanish.
800-273-8255
A shout out to all out supporters including Melody Engle, Carol McNally, Dee Richert, Marcia Treffman, The Geraci's and everyone else who has been with us from day one. 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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
This week, we discuss what you will all read online or be told from doctors on the life expectancy for someone diagnosed but we want you to not listen to numbers. We also wanted to address excessive daytime sleepiness.
A shout out to all out supporters including Dee Richert, The Geraci's and everyone else who has been with us from day one. 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 you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page at
https://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show
This week, we discuss how a diagnosis of LBD causes one to lose friends and family but we hope you take away that many friends and family step up as well. We also discuss again "showtiming" that those with LBD can do that make it difficult for the caregivers and doctors at times.
A shout out to Dee Riechert, The Geraci family, Janice Prochaska, Kara Biller and Charles Paolina. We cannot thank you all enough for helping us help others.
***Should you wish to bless us with your support you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
This week, we wanted to do a replay of the episode titled: The Power of Support Groups. We had such a powerful and wonderful support meeting this past Monday that we just felt the need to replay this episode for ya'll again so you can hear from some of the individuals who have been attending one of our zoom meetings. It truly has become a Lewy family and we hope you listen again and join us in one of the zoom meetings. The link for zoom meetings is under the announcements on both of our pages and it's the same link for all meetings.
Enjoy again The Power of Support Meetings and thank you all for your love and support.
A shout out to Dee Riechert, The Geraci family, Janice Prochaska, Kara Biller and Charles Paolina. We cannot thank you all enough for helping us help others.
***Should you wish to bless us with your support you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome back. This week, Curry and I share thoughts on times when it is hard for those with Lewy Body Dementia to get words out and what advice we and others have when that happens. Curry also shares with us about his fall he had this past weekend and more advice on dealing with a fall. We talk more about the power of attending a support group on zoom and joining support group pages specifically about LBD. Being able to talk with and about this disease to others living it is more powerful sometimes than talking with a doctor so please think about jining in one of the zoom meetings if you have not done so before. If you do not want to talk...just listen. That's fine too.
A shout out to Dee Riechert, The Geraci family, Janice Prochaska, Kara Biller and Charles Paolina. We cannot thank you all enough for helping us help others.
***Should you wish to bless us with your support you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
This week is another of our fireside chats where we share topics of discussion relating to LBD. First, we talk about how one can be down with Lewy symptoms for awhile and then bounce back. We all need to be thankful for that part of this crazy disease. We then shared some moving tips and suggestions caregivers shared with each other on how to cope while caring for a loved one with LBD.
We are in this together and need to lean on one another. If you don't belong to a support group or attend support meetings...we hope you join as the people in the groups truly understand what you are going through. A lot of Lewy Love to be had from those in the support groups.
A shout out to Dee Riechert, The Geraci family, Jeanette Clark, Marie Peterson, Krysty Herr, Tyler Wright. We cannot thank you all enough for helping us help others.
***Should you wish to bless us with your support you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome back Barry from Pennsylvania- part 2. This week, we asked Barry to share how he turned to a talent of his to help him through the tough days of dealing with Lewy symptoms. While he shared how he was in the early days of diagnosis which was hard to share, now he shares with us some of the positive things that he has been doing to cope when Lewy shows up.
A shout out to Dee Riechert, The Geraci family, Melissa Morman, Jeanette Clark, Marie Peterson, Krysty Herr, Tyler Wright. We cannot thank you all enough for helping us help others.
***Should you wish to bless us with your support you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome Barry from Pennsylvania. Being in his early 40's and having trouble getting a diagnosis, he shares with us his journey to diagnosis. He shares with us how he made it through a rough time while trying to get a proper diagnosis and yes..he did consider suicide but he shares with us how he got through that time. It is hard to listen to but we felt it important for him to share with you all as a way to help others through tough times.
A shout out to Dee Riechert, The Geraci family, Melissa Morman, Jeanette Clark, Marie Peterson, Krysty Herr, Tyler Wright. We cannot thank you all enough for helping us help others.
***Should you wish to bless us with your support you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome AnnMarie and James Hooge from Texas. They share with us their thoughts on attending support groups with other caregivers and others with Lewy Body Dementia. James and Curry also share a little more about their symptoms and how they cope.
A shout out to Dee Riechert, The Geraci family, Melissa Morman, Jeanette Clark, Marie Peterson, Krysty Herr, Tyler Wright. We cannot thank you all enough for helping us help others.
***Should you wish to bless us with your support you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome AnnMarie and James Hooge from Texas. They share with us how they coped with the diagnosis at first but are still living a good life. Many great ideas are shared on how to manage while living with Lewy Body Dementia.
A shout out to Dee Riechert, The Geraci family, Melissa Morman, Jeanette Clark, Marie Peterson, Krysty Herr, Tyler Wright. We cannot thank you all enough for helping us help others.
***Should you wish to bless us with your support you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome Julie and Ron Salamone this week. We discussed getting diagnosis, telling family and friends and the power of support groups. Julie shared some encouraging words of wisdom she was given from Ron's doctor after his diagnosis.
A shout out to Dee Riechert, The Geraci family, Melissa Morman, Jeanette Clark, Marie Peterson, Krysty Herr, Tyler Wright. We cant thank you all enough for helping us help others.
***Should you wish to bless us with your support you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome Vickie Setterberg this week as out=r first guest of 2022. Vickie shares her journey form diagnosis to getting involved with the Dementia Friendly America project which shows there is still a lot of good life left after diagnosis.
A shout out to those who send supporter funds in memory of our dear Bill Cramer who brought so much light into this world and was taken too soon. And shout out also to all of our supporters whether one time nominal donation or those who support us each week. We couldn't do this without all of you so thank you . xo
***Should you wish to bless us with your support you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
This week, Curry really opens up with us about a few things that he goes through and still stays positive. I also asked him to read one of his first posts from December 2016 which he wrote right after he was diagnosed. Hearing him read it choked me up so get your tissues ready.
A shout out to those who send supporter funds in memory of our dear Bill Cramer who brought so much light into this world and was taken too soon. A shout out also to Marie Peterson, Kristy Herr, Tyler Wright, Catherine Mazzie, Jane Wakerman, Paula Rice Biever, Toby Gorelick, James May, Debbie Lannom, and Julie Salamone.
***Should you wish to bless us with your support you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Curry and I share our thoughts on two topics that have been controversial…whether to call It Lewy body dementia or Lewy body disease and posting videos of those with dementia.
Podcast Linda has been fighting Covid for the past three weeks but we were able to get an episode done for y'all this week.
A shout out to all of our supporters! We couldn't do this without all of ya'll. xo
Tyler Wright, Cathy Bazzer, Paula Rice Beiver, Jane Wakeman and Toby Gorelick- thanks everyone!
***Should you wish to bless us with your support you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
This week, we wanted to replay the episode with Bill and Sharon Cramer in honor of Bill who passed last week.
We know you will hear the positivity from both Bill and Sharon shared on how to live a good life even with LBD.
Bill was positive to the end and even attended one of our zoom meetings recently .. bringing with him that wonderful smile and positive attitude.
A shout out to all of our supporters! We couldn't do this without all of ya'll. xo
***Should you wish to bless us with your support you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
We finally got to meet in person and do the podcast together sitting across from one another in same room.
There are no words to describe what it is like for someone with LBD to meet another person with LBD. The same holds true for when caregivers meet. Listen as we share our thoughts and feelings on what it was like meeting face to face for the first time and getting to record this episode while in the same room and not many miles apart.
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Podcast Linda was traveling this week so a quick apology for this going live a day late….
This week we discussed how LBD and Parkinson Disease are kissing cousins… and then we shared with our listeners what caregivers could use and will probably never ask for.
A shout out to all of our supporters! We couldn't do this without all of ya'll. xo
Tyler Wright, Cathy Bazzer, Paula Rice Beiver, Jane Wakeman and Toby Gorelick- thanks everyone!
***Should you wish to bless us with your support you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome back and Happy New Year. Thank you for your patience during December as we spent time with family.
It's another year and.....I wanted to ask Curry how his 2021 year went and for him to share how he feels now so we did a little catching up together.
A shout out to all of our supporters! We couldn't do this without all of ya'll. xo
Tyler Wright, Cathy Bazzer, Paula Rice Beiver, Jane Wakeman and Toby Gorelick- thanks everyone!
***Should you wish to bless us with your support you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome to another one of our fireside chats- just me and Curry. This week we share a post Curry wrote on his page back in February 2017. He is so open and shares how he feels and it helps so many of us understand more about this disease. He then shares with us what he felt about that post 4 years ago as he compares to how he is feeling today.
A shout out to all of our supporters! We couldn't do this without all of ya'll. xo
***Should you wish to bless us with your support you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome our dear friend Marcia from Indianapolis this week. When you attend the Monday, Friday or Saturday's spouses support meetings, you too can meet this sweet woman who always has a way with words to sooth your soul.
This week Marcia shares her story with her husband Stephen from diagnosis to sweet treats. It is because of people like Marcia sharing that we can all learn from and with one another as we live our best lives with Lewy.
A shout out to all of our supporters! We couldn't do this without all of ya'll. xo
***Should you wish to bless us with your support you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome back Derek S and our Curry as we ask them questions on things that can help caregivers and medical professionals better understand the disease from anxiety, walking issues, fears and ways to help or not help those with with LBD.
A shout out to all of our supporters! We couldn't do this without all of ya'll. xo
Welcome some of our newest supporters:
Judy Pressley, Jane Wakerman, Toby Gorelick, James May, Julie Salamone and Paul and Debbie Lannon
***Should you wish to bless us with your support you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome back Derek one of Curry's good Lewy Buddies who was on one of our first episodes a year ago. We wanted to bring a few first quests back to share how they are a year later as a way to let people with LBD know as Curry always says..."there's still a lot of good life left after a LBD diagnosis". Curry and Derek share about their hallucinations, thoughts to help anyone with LBD move as well as other great tips for caregivers.
A shout out to all of our supporters! We couldn't do this without all of ya'll. xo
Welcome some of our newest supporters:
Judy Pressley, Jane Wakerman, Toby Gorelick, James May, Julie Salamone and Paul and Debbie Lannon
***Should you wish to bless us with your support you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome Robin from Tennessee this week. Robin shares with us her journey getting her LBD diagnosis only to be told by new doctor she didn't have it then back to the beginning again. She will share with us how she keeps a positive attitude even when it gets hard and Lewy grabs ahold of you. We also wanted her to share about the game nights she started for those who attend the support groups. Lots of laughs to be had and she always makes and sends the winners prizes. Laughter is the best medicine no matter what life challenges are thrown at you. Enjoy hearing Robin's story.
A shout out to all of our supporters! We couldn't do this without all of ya'll. xo
***Should you wish to bless us with your support you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome back Lewy family. 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.
A shout out to all of our supporters! We couldn't do this without all of ya'll. xo
***Should you wish to bless us with your support you can use links below.
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome Naomi from Dublin, Ireland. She shares with us her journey to get diagnosed and some great advice on coping with a diagnosis of LBD and beyond- lots of holidays! She has such a positive outlook and warmth about her and we are sure you will love her as much as we we do once you hear her story.
A shout out to our new and some past Patreon and Go Fund Me Supporters
We couldn't do this podcast without all of you from those who were first supporters like Miriam and Matthew Geraci to our latest supporters Paul and Debbie Lannon. Thank you all form the bottom of our hearts. xo
***Should you wish to bless us with your support you can :
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome Donna from Minnesota. We just love when Donna and her husband Paul joins the support groups. Donna shares with us Paul's journey to diagnosis and several helpful programs he has done or is doing that could help others including speech therapy, palliative care, and attending support meetings.
A shout out to our new and some past Patreon and Go Fund Me Supporters
Toby Gorelick and Deb and Paul Lannom and Laura Michel, Pia Benard, Marcia TreffmanWe couldn't do this podcast without all of you who support us!
***Should you wish to bless us with your support you can :
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
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 meetings- people who get what you are going through and understand and never, ever judge. Enjoy meeting these individuals who are members of our Lewy Family.
I, for one, am thankful for each of them and their friendships. and k now Curry feels the same way.
A shout out to our new and some past Patreon and Go Fund Me Supporters
Toby Gorelick and Deb and Paul Lannom and Laura Michel, Pia Benard, Marcia TreffmanWe couldn't do this podcast without all of you who support us!
***Should you wish to bless us with your support you can :
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
This week we share ideas that could help when moving someone with dementia and some great ideas on things to get that will help not only those with dementia but their caregivers.
A shout out to our new and past Patreon and Go Fund Me Supporters
We couldn't do this podcast without all of you who support us!
***Should you wish to bless us with your support you can :
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
We’re baaaaaaack!
What a long month of August we had but are glad to be recording again.
This week it’s just me and Curry talking about some topics many discussed and asked about LBD.
We are so thankful to all of our supporters for your patience as we dealt with Covid, a hurricane and a tornado.
A shout out to our new and past Patreon and Go Fund Me Supporters
We couldn't do this podcast without all of you who support us!
***Should you wish to bless us with your support you can :
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Sharing one of our two part talks with Lewy Buddies from the first month we started recording to allow us time to work on a big Lewy Body Dementia Project.
As this disease can be such a roller coaster ride with many ups and downs, it’s sometimes good to listen to earlier episodes because you or your loved one may be at a different point in the disease now then when you listened the first time.
Thank you for your continued support and we hope to have new episode next week.
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
As we take this week and next to work on a big Lewy Body Dementia project, we thought we would replay the two episodes from season one that got the most views.
We have found many of you say you listen to earlier episodes again since things change so quickly sometimes with Lewy.
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome back Dr, Lebovitz from Amprion. We had the doctor on several months ago when we heard about the new test being developed to detect if someone may have Lewy Body Dementia. The reason we asked him back is to explain in more details what the test is, what it detects and how to get it.
You can read more about it on http://amprionme.com as well so you can do your own research about the test.
https://amprionme.com/
https://amprionme.com/syntap-test/
"SYNTap is a registered trademark of Amprion Inc."
Can you imagine there being a test and getting an early diagnosis so you can get the proper medications for the symptoms instead of having to see many doctors and many years sometimes to get the diagnosis since now it can only be a probable diagnosis from symptoms.
A shout out to our new and past Patreon and Go Fund Me Supporters
We couldn't do this podcast without all of you who support us!
***Should you wish to bless us with your support you can :
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
This week it's just me and Curry sharing with you some questions and responses from our pages as well as us giving our two cents. We share some good tips and advice on how to live a good life after diagnosis. Curry looks back to the time when he was first diagnosed and shares with us one of his first posts describing how he felt when diagnosed. But, he also then shares with us how he feels today and how getting the right medicines sooner than later make life so much better. As he always says..."You can still live a great life with LBD, you just live it differently".
A shout out to our new Patreon Supporters Naomi Gleeson and Cindy Barger.
We couldn't do this podcast without all of you who support us!
***Should you wish to bless us with your support you can :
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
This week we have a guest who wanted to come on again and share with us her thoughts as she looks back on the first year anniversary of her spouse's passing from LBD. Phyllis Banks share with us all her thoughts on what she would do differently, if anything as well as some good advice on handling doctors and grief before and after Bob's passing. We always appreciate your honestly and thoughts Phyllis.
Shout out to Naomi Gleeson from Ireland for being our latest Patreon supporter!
We couldn't do this podcast without all of you who support us!
***Should you wish to bless us with your support you can :
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome back Pat Snyder. Her husband John passed from LBD and since then she has been making short YouTube clips sharing helpful tips for us all. This week she shares with us how important it is to find the right doctor and then get the right medications while avoiding certain medicines at all cost.
Google Pat Snyder LBD YouTube and you will find her videos.
***Should you wish to bless us with your support you can :
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
LBD Serios: Medications:
https://connect.mayoclinic.org/blog/dementia-hub/newsfeed-post/lbd-video-series-medications/
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome Pat Snyder this week. Her husband John passed from LBD and since then she has been making short YouTube clips sharing helpful tips for us all. This week she shares with us many ways to be proactive with this disease.
We will have her on again as soon as we can and she has so much to share but in the meantime, Google Pat Snyder LBD YouTube and you will find her videos. This will be the last episode until our Curry recovers from Covid. Please send your prayers and healing thoughts for Curry and his wife Linda while they battle this terrible virus.
We will keep everyone posted on his “Our Journey with Lewy Body” Facebook page.
***Should you wish to bless us with your support you can :
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome Bill and Sharon Cramer this week. Listen as Bill shares with you his story and struggles living with Lewy Body Dementia but, by the end of this episode, you will know that your attitude is what dictates how one copes and lives with LBD. Bill is a true inspiration for us all. Yes- some have Lewy Body Dementia and need to live their lives differently but....there is still life to live and it is up to us all to find the joy in each day as Bill and Sharon share with us.
***Should you wish to bless us with your support you can :
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome Melinda as she shares her story about her husband Skip who has LBD. She explains what a loved one’s advocate needs to do to get the proper care but she also shares with us that love is what we all need to get through this journey.
Skip has had some rough times and it’s been hard to get certain medicines approved but you will all feel her strength as she shares about her beloved Skip.
***Should you wish to bless us with your support you can :
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We will still give shout outs each week but, we posted supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome Patti this week who cares for her mother who has LBD. She shares with us how her mom was first diagnosed with Alzheimer’s but then changed to LBD. She also shares some great ways she works with her mom that she feels has helped her along the way.
***Should you wish to bless us with your support you can :
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
We have listed all present and past Patreon and Go Fund Me supporters in the Announcements page of the Our Journey with Lewy Body Dementia and our Lewy Body Roller Coaster Podcast Pages.
We want to write more about those coming on the episodes and we are limited to how many words we can put here for the description so, we decided to let ya'll know we will still give shout outs but will post supporters under Announcements on our Facebook pages.
Thank you for listening each week.
Don't forget to join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Since we received so many people commenting on last week's episode with Teepa Snow on denial, we wanted to replay our first talk with her.
This week our guest is Teepa Snow. She is a leading educator in the field of dementia education and we are sure all of you have heard of her and even watched her videos. She shares with us responses to questions some of ya'll sent to us to ask her including...how to help your loved one understand he/she has Lewy Body when he/she is in denial, how to respond to a loved one who continually asks to go home when they are home and finally, how do you keep your patience with your loved one as their caregiver.
***Should you wish to bless us with your support you can :
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
**Patron Shout Out
A very special shout out to Miriam and Matthew Geraci and Phyllis Banks for being super monthly patrons**
- Bronze
Amy
Sarah Szypula
Matthew Szypula
Andrew Szypula
Polina Dineva
Ginger Gillmore
Tedd Winkler
Ryan Samuel
Gillian Thompson
LJean Howell
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
Karen Klink
Rita McCord
Kathy Deschenaeau
- Gold Patrons
Sharon Welch
**Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
Pat Crawford
Belinda Ray
Cherie Lawrence
Linda Bolbecker
Daisy Best
Sara Langer
Larry Herig
Brian and Amy Dougherty
Darlene Hacker
Donna Horne
Kim Tracy
Platinum Patrons**
Darlene Passmore-Armstrong
Thomas Connelly
Pat Crawford
Tere Wisell
Robin Lavaron
Alisa Mahoney
Albert Ferraro and Family
Norma Loeb
Go Fund Me Shout Outs
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather & Lewis Grossit
Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan x 2 :-)
Susan Lavoice x 2 :-)
LJean Howell
Marcia Treffman x 2. :-)
Tedde Hope Hamilton
Geri Sera
Melinda Farmer
Michaele Couch
Pia Bedard
Russell Lebovitz
Nancy Guerro
Taylor Swantek
Debra Casey
Donna Horne
Richard Brown
Beth Sapiro
Kate Press
Rachel Hodge
Frances Gordon
Eli Sable
Barbara Rosen
Francine Raizes
Lev Polinsky
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome back Teepa Snow. This week is all about denial. We delve into and discuss ways to handle denial from the person diagnosed, a spouses denial, and an adult child’s denial.
Teepa shares with us helpful ways to discuss the diagnosis of LBD and ways to help those who may be in denial.
***Should you wish to bless us with your support you can :
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
**Patron Shout Out
A very special shout out to Miriam and Matthew Geraci and Phyllis Banks for being super monthly patrons**
- Bronze
Amy
Sarah Szypula
Matthew Szypula
Andrew Szypula
Polina Dineva
Ginger Gillmore
Tedd Winkler
Ryan Samuel
Gillian Thompson
LJean Howell
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
Karen Klink
Rita McCord
Kathy Deschenaeau
- Gold Patrons
Sharon Welch
**Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
Pat Crawford
Belinda Ray
Cherie Lawrence
Linda Bolbecker
Daisy Best
Sara Langer
Larry Herig
Brian and Amy Dougherty
Darlene Hacker
Donna Horne
Kim Tracy
Platinum Patrons**
Darlene Passmore-Armstrong
Thomas Connelly
Pat Crawford
Tere Wisell
Robin Lavaron
Alisa Mahoney
Albert Ferraro and Family
Norma Loeb
Go Fund Me Shout Outs
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather & Lewis Grossit
Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan x 2 :-)
Susan Lavoice x 2 :-)
LJean Howell
Marcia Treffman x 2. :-)
Tedde Hope Hamilton
Geri Sera
Melinda Farmer
Michaele Couch
Pia Bedard
Russell Lebovitz
Nancy Guerro
Taylor Swantek
Debra Casey
Donna Horne
Richard Brown
Beth Sapiro
Kate Press
Rachel Hodge
Frances Gordon
Eli Sable
Barbara Rosen
Francine Raizes
Lev PolinskyThank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Just a reminder- we are not giving medical advice, merely sharing our experiences.Welcome the Executive Director of the Lewy Body Dementia Association, Todd Graham .
We hope all our listeners have already found the LBDA.org website where you will find much information on LBD as well as links to many resources.
We talk about Todd's background and what led him to the LBDA as well as how the organization started. We talk about the many ways the organization provides educational information about LBD and hope you will have a better understanding of all the resources you can access on the site.
***Should you wish to bless us with your support you can :
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
*the GoFundMe page athttps://gofund.me/c416ecb6
**Patron Shout Out
A very special shout out to Miriam and Matthew Geraci and Phyllis Banks for being super monthly patrons**
- Bronze
Amy
Sarah Szypula
Matthew Szypula
Andrew Szypula
Polina Dineva
Ginger Gillmore
Tedd Winkler
Ryan Samuel
Gillian Thompson
LJean Howell
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
Karen Klink
Rita McCord
Kathy Deschenaeau
- Gold Patrons
Sharon Welch
**Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
Pat Crawford
Belinda Ray
Cherie Lawrence
Linda Bolbecker
Daisy Best
Sara Langer
Larry Herig
Brian and Amy Dougherty
Darlene Hacker
Donna Horne
Kim Tracy
Platinum Patrons**
Darlene Passmore-Armstrong
Thomas Connelly
Pat Crawford
Tere Wisell
Robin Lavaron
Alisa Mahoney
Albert Ferraro and Family
Norma Loeb
Go Fund Me Shout Outs
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather & Lewis Grossit
Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan x 2 :-)
Susan Lavoice x 2 :-)
LJean Howell
Marcia Treffman x 2. :-)
Tedde Hope Hamilton
Geri Sera
Melinda Farmer
Michaele Couch
Pia Bedard
Russell Lebovitz
Nancy Guerro
Taylor Swantek
Debra Casey
Donna Horne
Richard Brown
Beth Sapiro
Kate Press
Rachel Hodge
Frances Gordon
Eli Sable
Barbara Rosen
Francine Raizes
Lev PolinskyThank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Just a reminder- we are not giving medical advice, merely sharing our experiences.This week Tedde shares her journey caring for her brother who has Lewy Body Dementia. We know caregiving takes on many faces and you will feel the love she has for her brother as she cares for his needs. Many good suggestions are shared.
We always say it is different caring for a spouse versus a parent or sibling with dementia but by all of us sharing... we can help each other be the best caregivers we can be.
Should you wish to bless us with your support you can go to:
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page athttps://gofund.me/c416ecb6
**Patron Shout Out
A very special shout out to Miriam and Matthew Geraci and Phyllis Banks for being super monthly patrons**
- Bronze
Amy
Sarah Szypula
Matthew Szypula
Andrew Szypula
Polina Dineva
Ginger Gillmore
Tedd Winkler
Ryan Samuel
Gillian Thompson
LJean Howell
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
Karen Klink
Rita McCord
Kathy Deschenaeau
- Gold Patrons
Sharon Welch
**Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
Pat Crawford
Belinda Ray
Cherie Lawrence
Linda Bolbecker
Daisy Best
Sara Langer
Larry Herig
Brian and Amy Dougherty
Darlene Hacker
Platinum Patrons**
Darlene Passmore-Armstrong
**Thomas Connelly
Pat Crawford
Tere Wisell
Robin Lavaron
Alisa Mahoney
Albert Ferraro and Family
Norma Loeb
Super Patrons. Miriam and Matthew Geraci and Phyllis Banks**
Go Fund Me Shout Outs
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather and Lewis Grossit
Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan
Susan Lavoice x 2 :-)
LJean Howell
Marcia Treffman x 2 :0-
Tedde Hope Hamilton
Geri Sera
Melinda Farmer
Michaele Couch
Pia Bedard
Russell Lebovitz
Nancy Guerro
Taylor Swantek
Debra CaseyThank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Just a reminder- we are not giving medical advice, merely sharing our experiences.
Welcome back Susan Lavoice. Susan was on very early in the start of this podcast and she was struggling to get a diagnosis and meds to help symptoms. It is amazing how well she is doing now since she has medicines to help her symptoms. Please listen so you understand that there is hope and more life left after a diagnosis of LBD as you will hear from Susan and Curry.
We always tell Susan she is like a different person now and so full of life and hope.
We are grateful she agreed to come back on and share with you all.
Should you wish to bless us with your support you can go to:
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page athttps://gofund.me/c416ecb6
**Patron Shout Out
A very special shout out to Miriam and Matthew Geraci and Phyllis Banks for being super monthly patrons**
- Bronze
Amy
Sarah Szypula
Matthew Szypula
Andrew Szypula
Polina Dineva
Ginger Gillmore
Tedd Winkler
Ryan Samuel
Gillian Thompson
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
Karen Klink
Rita McCord
Kathy Deschenaeau
- Gold Patrons
Sharon Welch
**Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
Pat Crawford
Belinda Ray
Cherie Lawrence
Linda Bolbecker
Daisy Best
Sara Langer
Larry Herig
Brian and Amy Dougherty
Darlene Hacker
Platinum Patrons**
Darlene Passmore-Armstrong
**Thomas Connelly
Pat Crawford
Tere Wisell
Robin Lavaron
Alisa Mahoney
Albert Ferraro and Family
Norma Loeb
Super Patrons. Miriam and Matthew Geraci and Phyllis Banks**
Go Fund Me Shout Outs
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather and Lewis Grossit
Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan
Susan Lavoice x 2 :-)
LJean Howell
Marcia Treffman x 2 :0-
Tedde Hope Hamilton
Geri Sera
Melinda Farmer
Michaele Couch
Pia Bedard
Russell Lebovitz
Nancy Guerro
Taylor Swantek
Debra CaseyThank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Just a reminder- we are not giving medical advice, merely sharing our experiences.
This week we heard from Brian. Both of his parents had a different form of dementia and now he is fighting to get a diagnosis for himself. We hope by each of our guests sharing their stories that we can help those seeking a diagnosis find one sooner as we need the medical fields to listen to these stories and know that it is unacceptable for anyone to have to fight for a diagnosis or for it to take years to get a proper diagnosis..
Brian shares with us his journey caring for a parents with Alzheimers and one with LBD.
Should you wish to bless us with your support you can go to:
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page athttps://gofund.me/c416ecb6
**Patron Shout Out
A very special shout out to Miriam and Matthew Geraci and Phyllis Banks for being super monthly patrons**
- Bronze
Amy
Sarah Szypula
Matthew Szypula
Andrew Szypula
Polina Dineva
Ginger Gillmore
Tedd Winkler
Ryan Samuel
Gillian Thompson
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
Karen Klink
Rita McCord
Kathy Deschenaeau
- Gold Patrons
Sharon Welch
**Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
Pat Crawford
Belinda Ray
Cherie Lawrence
Linda Bolbecker
Daisy Best
Sara Langer
Larry Herig
Brian and Amy Dougherty
Darlene Hacker
Platinum Patrons**
Darlene Passmore-Armstrong
**Thomas Connelly
Pat Crawford
Tere Wisell
Robin Lavaron
Alisa Mahoney
Albert Ferraro and Family
Norma Loeb
Super Patrons. Miriam and Matthew Geraci and Phyllis Banks**
Go Fund Me Shout Outs
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather and Lewis Grossit
Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan
Susan Lavoice x 2 :-)
LJean Howell
Marcia Treffman x 2 :0-
Tedde Hope Hamilton
Geri Sera
Melinda Farmer
Michaele Couch
Pia Bedard
Russell Lebovitz
Nancy Guerro
Taylor Swantek
Debra CaseyThank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Just a reminder- we are not giving medical advice, merely sharing our experiences.
This week is to part two of Lewy terms as 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 were so many terms many of you sent me to discuss that we needed to break her recording into 2 parts. This is definitely our most educational episode and one you won't want to miss and hear.
Should you wish to bless us with your support you can go to:
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page athttps://gofund.me/c416ecb6
**Patron Shout Out
A very special shout out to Miriam and Matthew Geraci and Phyllis Banks for being super monthly patrons**
- Bronze
Amy
Sarah Szypula
Matthew Szypula
Andrew Szypula
Polina Dineva
Ginger Gillmore
Tedd Winkler
Ryan Samuel
Gillian Thompson
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
Karen Klink
Rita McCord
Kathy Deschenaeau
- Gold Patrons
Sharon Welch
**Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
Pat Crawford
Belinda Ray
Cherie Lawrence
Linda Bolbecker
Daisy Best
Sara Langer
Larry Herig
Brian and Amy Dougherty
Darlene Hacker
Platinum Patrons**
Darlene Passmore-Armstrong
**Thomas Connelly
Pat Crawford
Tere Wisell
Robin Lavaron
Alisa Mahoney
Albert Ferraro and Family
Norma Loeb
Super Patrons. Miriam and Matthew Geraci and Phyllis Banks**
Go Fund Me Shout Outs
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather and Lewis Grossit
Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan
Susan Lavoice x 2 :-)
LJean Howell
Marcia Treffman x 2 :0-
Tedde Hope Hamilton
Geri Sera
Melinda Farmer
Michaele Couch
Pia Bedard
Russell Lebovitz
Nancy Guerro
Taylor Swantek
Decra CaseyThank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
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 were so many terms many of you sent me to discuss that we needed to break her recording into 2 parts. This is definitely our most educational episode and one you won't want to miss and hear.
Should you wish to bless us with your support you can go to:
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page athttps://gofund.me/c416ecb6
**Patron Shout Out
A very special shout out to Miriam and Matthew Geraci and Phyllis Banks for being super monthly patrons**
- Bronze
Amy
Sarah Szypula
Matthew Szypula
Andrew Szypula
Polina Dineva
Ginger Gillmore
Tedd Winkler
Ryan Samuel
Gillian Thompson
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
Karen Klink
Rita McCord
Kathy Deschenaeau
- Gold Patrons
Sharon Welch
Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
Pat Crawford
Belinda Ray
Cherie Lawrence
Linda Bolbecker
Daisy Best
Sara Langer
Larry Herig
Brian and Amy Dougherty Platinum Patrons
Darlene Passmore-Armstrong
**Thomas Connelly
Pat Crawford
Tere Wisell
Robin Lavaron
Alisa Mahoney
Albert Ferraro and Family
Norma Loeb
Super Patrons. Miriam and Matthew Geraci**
Go Fund Me Shout Outs
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather and Lewis Grossit
Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan
Susan Lavoice
LJean Howell
Marcia Treffman
Tedde Hope Hamilton
Geri Sera
Melinda Farmer
Michaele Couch
Pia Bedard
Russell Lebovitz
Nancy Guerro
Taylor SwantekThank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome Bonnie Weber this week. She is a caregiver for her husband Randy. She shares her journey getting Randy his diagnosis but also shares with us how Randy participated in a few studies. Randy was a trooper with all the testing done with the studies but we also thank him for doing this because it could help doctors find a cure for this disease.
Should you wish to bless us with your support you can go to:
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page athttps://gofund.me/c416ecb6
**Patron Shout Out
A very special shout out to Miriam and Matthew Geraci and Phyllis Banks for being super monthly patrons**
- Bronze
Amy
Sarah Szypula
Matthew Szypula
Andrew Szypula
Polina Dineva
Ginger Gillmore
Tedd Winkler
Ryan Samuel
Gillian Thompson
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
Karen Klink
Rita McCord
Kathy Deschenaeau
- Gold Patrons
Sharon Welch
Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
Pat Crawford
Belinda Ray
Cherie Lawrence
Linda Bolbecker
Daisy Best
Sara Langer
- Platinum Patrons
Darlene Passmore-Armstrong
**Thomas Connelly
Pat Crawford
Tere Wisell
Robin Lavaron
Alisa Mahoney
Albert Ferraro and Family
Norma Loeb
Super Patrons. Miriam and Matthew Geraci**
Go Fund Me Shout Outs
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather and Lewis Grossit
Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan
Susan Lavoice
LJean Howell
Marcia Treffman
Tedde Hope Hamilton
Geri Sera
Melinda Farmer
Michaele Couch
Pia Bedard
Russell Lebovitz
Nancy Guerro
Taylor SwantekThank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome Nancy this week. She shares with us her journey and long road to get a diagnosis after being told nothing was wrong only to be told that her husband has Lewy Body Dementia. She will share with us how she was an advocate for her husband which everyone with LBD needs. Be that squeaky wheel and don't let doctors tell you nothing is wrong when you know there is. Join our support group meets each week -Monday and Friday at 11:30 est. and you will meet others on this journey and see there is hope after diagnosis as Curry always says and you will meet many people with LBD and their caregivers. You are not alone on this journey.
Should you wish to bless us with your support you can go to:
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page athttps://gofund.me/c416ecb6
**Patron Shout Out
A very special shout out to Miriam and Matthew Geraci and Phyllis Banks for being super monthly patrons**
- Bronze
Amy
Sarah Szypula
Matthew Szypula
Andrew Szypula
Polina Dineva
Ginger Gillmore
Tedd Winkler
Ryan Samuel
Gillian Thompson
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
Karen Klink
Rita McCord
Kathy Deschenaeau
- Gold Patrons
Sharon Welch
Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
Pat Crawford
Belinda Ray
Cherie Lawrence
Linda Bolbecker
Daisy Best
Sara Langer
- Platinum Patrons
Darlene Passmore-Armstrong
**Thomas Connelly
Pat Crawford
Tere Wisell
Robin Lavaron
Alisa Mahoney
Albert Ferraro and Family
Norma Loeb
Super Patrons. Miriam and Matthew Geraci**
Go Fund Me Shout Outs
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather and Lewis Grossit
Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan
Susan Lavoice
LJean Howell
Marcia Treffman
Tedde Hope Hamilton
Geri Sera
Melinda Farmer
Michaele Couch
Pia Bedard
Russell Lebovitz
Nancy GuerroThank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
This week we try to help you all understand the difference between Palliative Care vs Hospice Care. Phyllis Banks came back to share with us her experience with each as she cared for her husband Bob who had LBD and has since passed. These two types of care can be very confusing and even after we recorded, we learned more. For me in NJ, I did not have to get his primary dr. to recommend. I just made a call and said Jim has LBD. We also learned each state may be different so make those calls ya'll.
LBD diagnosis qualifies for palliative care. Be that squeaky wheel for your loved one or for yourself.
Link for doc comparing each
https://www.nhpco.org/wp-content/uploads/2019/04/PalliativeCare_VS_Hospice.pdf
Should you wish to bless us with your support you can go to:
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page athttps://gofund.me/c416ecb6
**Patron Shout Out
A very special shout out to Miriam and Matthew Geraci for being super monthly patrons**
- Bronze
Amy
Sarah Szypula
Matthew Szypula
Andrew Szypula
Polina Dineva
Ginger Gillmore
Tedd Winkler
Ryan Samuel
Gillian Thompson
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
Karen Klink
Rita McCord
- Gold Patrons
Sharon Welch
Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
Pat Crawford
Belinda Ray
Cherie Lawrence
Linda Bolbecker
- Platinum Patrons
Darlene Passmore-Armstrong
**Thomas Connelly
Pat Crawford
Tere Wisell
Robin Lavaron
Alisa Mahoney
Albert Ferraro and Family
Norma Loeb
Super Patrons. Miriam and Matthew Geraci**
Go Fund Me Shout Outs
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather and Lewis Grossit
Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan
Susan Lavoice
LJean Howell
Marcia Treffman
Tedde Hope Hamilton
Geri Sera
Melinda Farmer
Michaele Couch
Pia Bedard
Russell Lebovitz
Nancy GuerroThank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
This is going to be a game changer in the world of Lewy Body Dementia. Dr. Russel Lebovitz from Amprion joins us to share with you all the new test coming soon that can detect Lewy Body Dementia. We discuss the Science behind the test and how it will help to get an early diagnosis so people can get the proper medications and not need to wait years, at times, to get a LBD diagnosis. Thank you to Christy Hui and Dr. Lebovitz for working with us to helps those with LBD.
Please visit their webpage for all the information on Amprion's mission and the test.
https://amprionme.com/lewy-body-dementia/lbd-test/
Should you wish to bless us with your support you can go to:
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page athttps://gofund.me/c416ecb6
**Patron Shout Out
A very special shout out to Miriam and Matthew Geraci for being super monthly patrons**
- Bronze
Amy
Sarah Szypula
Matthew Szypula
Andrew Szypula
Polina Dineva
Ginger Gillmore
Tedd Winkler
Ryan Samuel
Gillian Thompson
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
Karen Klink
Rita McCord
- Gold Patrons
Sharon Welch
Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
Pat Crawford
Belinda Ray
Cherie Lawrence
- Platinum Patrons
Darlene Passmore-Armstrong
**Thomas Connelly
Pat Crawford
Tere Wisell
Robin Lavaron
Alisa Mahoney
Albert Ferraro and Family
Norma Loeb
Super Patrons. Miriam and Matthew Geraci**
Go Fund Me Shout Outs
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather and Lewis Grossit
Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan
Susan Lavoice
LJean Howell
Marcia Treffman
Tedde Hope Hamilton
Geri Sera
Melinda Farmer
Michaele Couch
Pia BedardThank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome Norma Loeb, the founder of the Lewy Body Dementia Resource Center. Norma’s mom had LBD. Norma saw the need for a resource center where people can go to get a wealth of information and support while trying to navigate this confusing disease.
She shares with us what the Lewy Body Dementia Resource Center website offers. We included the link below.
We hope to collaborate with the LBDRC on a few projects in the future and hope you check out the webpage for the LBDRC as it provides many helpful links.
https://lewybodyresourcecenter.org/
Helpline: 833-LBDLINE
Should you wish to bless us with your support you can go to:
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page athttps://gofund.me/c416ecb6
**Patron Shout Out
A very special shout out to Miriam and Matthew Geraci for being super monthly patrons**
- Bronze
Amy
Sarah Szypula
Matthew Szypula
Andrew Szypula
Polina Dineva
Ginger Gillmore
Tedd Winkler
Ryan Samuel
Gillian Thompson
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
Karen Klink
Rita McCord
- Gold Patrons
Sharon Welch
Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
Pat Crawford
Belinda Ray
Cherie Lawrence
- Platinum Patrons
Darlene Passmore-Armstrong
Thomas Connelly
Pat Crawford
Tere Wisell
Robin Lavaron
Alisa Mahoney
Albert Ferraro and Family
- Super Patrons
Miriam and Matthew Geraci
Go Fund Me Shout Outs
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather and Lewis Grossit
Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan
Susan Lavoice
LJean Howell
Marcia Treffman
Tedde Hope Hamilton
Geri Sera
Melinda Farmer
Michaele Couch
Pia Bedard
Norma LoebThank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome Norman McNamara from the UK this week. You will love hearing from Norm as much as we did speaking with him. He shares with all of you how he started the Purple Angels to being awareness to dementia specifically for business but also for everyone. It has become a world wide organization with purple angels in over 60 countries. He also shares his story with Lewy Body Dementia and how he wants to share with that even if you are diagnosed with any type of dementia that you still have a great life ahead of you. He also shares with us about the "World Rocks Against Dementia" event coming up this year. All links are below for you to find out how to get involved wit WRAD and become a purple angel.
Purple Angel Film
https://youtu.be/P9L1zIFPPvo
Purple Angel link:
https://purpleangel-global.com/
WRAD
https://purpleangel-global.com/world-rocks-against-dementia/
Purple Angel Ambassador Program
https://purpleangel-global.com/become-an-ambassador/
Zoom Meet ups:
Monday and Friday at 11:30 est for anyone with LBD and their caregivers
Saturday at 3 pm est for LBD Spouses/partners only
Should you wish to bless us with your support you can go to:
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page athttps://gofund.me/c416ecb6
**Patron Shout Out
A very special shout out to Miriam and Matthew Geraci for being super monthly patrons**
- Bronze
Amy
Sarah Szypula
Matthew Szypula
Andrew Szypula
Polina Dineva
Ginger Gillmore
Tedd Winkler
Ryan Samuel
Gillian Thompson
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
Karen Klink
Rita McCord
- Gold Patrons
Sharon Welch
Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
Pat Crawford
Belinda Ray
Cherie Lawrence
- Platinum Patrons
Darlene Passmore-Armstrong
Thomas Connelly
Pat Crawford
Tere Wisell
Robin Lavaron
Alisa Mahoney
Albert Ferraro and Family
- Super Patrons
Miriam and Matthew Geraci
Go Fund Me Shout Outs
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather and Lewis Grossit
Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan
Susan Lavoice
LJean Howell
Marcia Treffman
Tedde Hope Hamilton
Geri Sera
Melinda Farmer
Michaele Couch
Pia BedardThank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome Sara this week. Sara is a neurologist who has Lewy Body Dementia. Sara shares with us her journey with diagnosis. You will hear that her family has quite a history with dementia and Lewy particularly. She shared a lot of great information but towards the end of the episode she shares what could be a game changer in this disease and its diagnostic implications for us all and those seeking a diagnosis. Thanks for sharing Sara. We hope to have Sara on again soon.
Here is the link for the LBD Test Sara discusses:
https://amprionme.com/parkinzheimer/lbd-test/
Zoom Meet ups:
Monday and Friday at 11:30 est for anyone with LBD and their caregivers
Saturday at 3 pm est for LBD Spouses/partners only
Should you wish to bless us with your support you can go to:
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page athttps://gofund.me/c416ecb6
**Patron Shout Out
A very special shout out to Miriam and Matthew Geraci for being super monthly patrons**
- Bronze
Amy
Sarah Szypula
Matthew Szypula
Andrew Szypula
Polina Dineva
Ginger Gillmore
Tedd Winkler
Ryan Samuel
Gillian Thompson
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
Karen Klink
Rita McCord
- Gold Patrons
Sharon Welch
Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
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Chris Oaks
Lenny Asuncion
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Cherie Lawrence
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Darlene Passmore-Armstrong
Thomas Connelly
Pat Crawford
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Miriam and Matthew Geraci
Go Fund Me Shout Outs
Lisa DeRoa
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Lori Krag
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Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan
Susan Lavoice
LJean Howell
Marcia Treffman
Tedde Hope Hamilton
Geri Sera
Melinda Farmer
Michaele Couch
Pia BedardThank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at: lewybodyrollercoaster@gmail.com
Until next week...
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
We can hardly believe this is our 25th week of doing this podcast so in light of the fact that Curry who lives in Texas currently has no power or heat and is experiencing well below freezing temperatures, we could not record a new episode for you all but thought we would share a bit of our first recording with everyone.
Should you wish to bless us with your support you can go to:
Copy and paste link, if needed
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page athttps://gofund.me/c416ecb6
**Patron Shout Out
A very special shout out to Miriam and Matthew Geraci for being super monthly patrons**
- Bronze
Amy
Sarah Szypula
Matthew Szypula
Andrew Szypula
Polina Dineva
Ginger Gillmore
Tedd Winkler
Ryan Samuel
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
Karen Klink
Rita McCord
- Gold Patrons
Sharon Welch
Nancy Guerro
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Cindy
Marcia Treffman
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Cherie Lawrence
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Darlene Passmore-Armstrong
Thomas Connelly
Pat Crawford
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Miriam and Matthew Geraci
Go Fund Me Shout Outs
Lisa DeRoa
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Lori Krag
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Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan
Susan Lavoice
LJean Howell
Marcia Treffman
Tedde Hope Hamilton
Geri Sera
Melinda FarmerThank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at: lewybodyrollercoaster@gmail.com
Until next week...
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome Brian Doc back to share about some of his Travel with Lewy blog. We appreciate that he is so open and write about his Lewy Journey in a way that helps us understand what he is going through but pouts a comic twist on each post. We talk about Lewy headaches, autonomic system issue and what he needs to do when Lewy is winning for the day.
Thank you for sharing with us Brian and coming back on to share.
If you haven’t read any of his blogs, please check them out.
http://Lastoutmedia.com/
scroll to bottom of link page link above and search for Brian Dougherty articles or click one below to see this week's blog or last week's:
Travels with Lewy by Brian Dougherty
https://lastoutmedianetwork.com/2021/01/25/travels-with-lewy-information-packs/
Should you wish to bless us with your support you can go to:
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page athttps://gofund.me/c416ecb6
**Patron Shout Out
A very special shout out to Miriam and Matthew Geraci for being super monthly patrons**
- Bronze
Amy
Sarah Szypula
Matthew Szypula
Andrew Szypula
Polina Dineva
Ginger Gillmore
Tedd Winkler
Ryan Samuel
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
Karen Klink
Rita McCord
- Gold Patrons
Sharon Welch
Nancy Guerro
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Cindy
Marcia Treffman
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Chris Oaks
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Belinda Ray
Cherie Lawrence
- Platinum Patrons
Darlene Passmore-Armstrong
Thomas Connelly
Pat Crawford
Tere Wisell
Robin Lavaron
Alisa Mahoney
Albert Ferraro and Family
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Miriam and Matthew Geraci
Go Fund Me Shout Outs
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather and Lewis Grossit
Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan
Susan Lavoice
LJean Howell
Marcia Treffman
Tedde Hope Hamilton
Melinda FarmerThank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at: lewybodyrollercoaster@gmail.com
Until next week...
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
This week we have Stephanie and Ron from Canada sharing their Lewy journey.
Brian Doc’s second episode will air next week due to technical issues so tune in to hear him share more about his Travel with Lewy Blogs.
On this episode, Stephane shares how Ron was diagnosed but also shares several symptoms that Ron has that Curry also has including neuropathy pain in their feet and hands as well as how those with Lewy tend to chew differently. It was a great discussion from a caregiver and nurse’s point of view as Stephanie explains how she helps her students understand what someone with dementia experiences.
Thank you Stephanie and Ron for sharing your story with us.
Should you wish to bless us with your support you can go to:
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page athttps://gofund.me/c416ecb6
**Patron Shout Out
A very special shout out to Miriam and Matthew Geraci for being super monthly patrons**
- Bronze
Amy
Sarah Szypula
Matthew Szypula
Andrew Szypula
Polina Dineva
Ginger Gillmore
Tedd Winkler
Ryan Samuel
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
Karen Klink
- Gold Patrons
Sharon Welch
Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
Pat Crawford
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Darlene Passmore-Armstrong
Thomas Connelly
Pat CrawfordTere Wisell
Robin Lavaron
- Super Patrons
Miriam and Matthew Geraci
Go Fund Me Shout Outs
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather and Lewis Grossit
Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan
Susan Lavoice
LJean Howell
Marcia TreffmanThank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at: lewybodyrollercoaster@gmail.com
Until next week...
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
This week we have another Lewy Buddy who is also a blogger. Brian Doc has written many blogs about this journey with Lewy Body Dementia.
Hear how he stays positive even when Lewy and Parkinsonism symptoms hit hard. Curry and Brian share how they feel during those sleepless episodes and also share helpful information for those with Lewy and their caregivers.
If you haven’t read any of his blogs, please check them out.
http://Lastoutmedia.com/
scroll to bottom of link page link above and search for Brian Dougherty articles or click one below to see this week's blog or last week's
January 27, 20201 Blog post
https://lastoutmedianetwork.com/2021/01/27/podcast-staying-positive-even-with-lewy-and-parkinsonism/?fbclid=IwAR2sRqlYuwnbwPXd_65tJTMG0rN15iwOUKyP8zAioY3uiLylw5xGSseByTY
Travels with Lewy by Brian Dougherty
https://lastoutmedianetwork.com/2021/01/25/travels-with-lewy-information-packs/
Should you wish to bless us with your support you can go to:
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page athttps://gofund.me/c416ecb6
**Patron Shout Out
A very special shout out to Miriam and Matthew Geraci for being super monthly patrons**
- Bronze
Amy
Sarah Szypula
Matthew Szypula
Andrew Szypula
Polina Dineva
Ginger Gillmore
Tedd Winkler
Ryan Samuel
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
Karen Klink
- Gold Patrons
Sharon Welch
Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
Pat Crawford
- Platinum Patrons
Darlene Passmore-Armstrong
Thomas Connelly
Pat Crawford
- Super Patrons
Miriam and Matthew Geraci
Go Fund Me Shout Outs
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather and Lewis Grossit
Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan
Susan Lavoice
LJean Howell
Marcia TreffmanThank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at: lewybodyrollercoaster@gmail.com
Until next week...
Disclaimer: We are not medical personnel nor are we offering medical advice. We are sharing our thoughts and experiences with others to let everyone on this journey know they are not alone.
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Curry’s long time friend from grade school Darlene joins us this week to share her journey with her husband Bobby. You will hear her share Bobby’s symptoms with his diagnosis of PSP-Progressive Supranuclear Palsy but as she looks back on his symptoms, especially the Parkinsonism symptoms, she wonders if he was misdiagnosed and perhaps could have had Lewy Body Dementia.
She also shares some good suggestions for those who are Veterans and how you should keep the VA updated on all new symptom.
Should you wish to bless us with your support you can go to:
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page athttps://gofund.me/c416ecb6
**Patron Shout Out
A very special shout out to Miriam and Matthew Geraci for being super monthly patrons**
- Bronze
Amy
Sarah Szypula
Matthew Szypula
Andrew Szypula
Polina Dineva
Ginger Gillmore
Tedd Winkler
Ryan Samuel
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
Karen Klink
- Gold Patrons
Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
Pat Crawford
- Platinum Patrons
Darlene Passmore-Armstrong
Thomas Connelly
Pat Crawford
- Super Patrons
Miriam and Matthew Geraci
Go Fund Me Shout Outs
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather and Lewis Grossit
Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan
Susan Lavoice
LJean Howell
Marcia TreffmanThank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at: lewybodyrollercoaster@gmail.com
Until next week...
Disclaimer: We are not medical personnel nor are we offering medical advice. We are sharing our thoughts and experiences with others to let everyone on this journey know they are not alone.
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
This episode we have Janeen Obis on to share her story about her husband Paul. Paul Obis started Vegetarian Times Magazine many years ago and was good friends with Fred Rogers but as with others who come on the podcast to share, Paul too did not get correct diagnosis at first.
You will hear the love Janeen had and still has for Paul and how they handled getting the diagnosis and what they did together to make every moment count. Janeen explains what she means when she says Lewy was both if their disease.
Should you wish to bless us with your support you can go to:
https://patreon.com/lewybodyrollercoasterpodcast
the GoFundMe page athttps://gofund.me/c416ecb6
**Patron Shout Out
A very special shout out to Miriam and Matthew Geraci for being super monthly patrons**
- Bronze
Amy
Sarah Szypula
Matthew Szypula
Andrew Szypula
Polina Dineva
Ginger Gillmore
Tedd Winkler
Ryan Samuel
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
Karen Klink
- Gold Patrons
Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
Pat Crawford
- Platinum Patrons
Darlene Passmore-Armstrong
Thomas Connelly
Pat Crawford
- Super Patrons
Miriam and Matthew Geraci
Go Fund Me Shout Outs
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather and Lewis Grossit
Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan
Susan Lavoice
LJean Howell
Marcia Treffman
Thank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at: lewybodyrollercoaster@gmail.com
Until next week...
Disclaimer: We are not medical personnel nor are we offering medical advice. We are sharing our thoughts and experiences with others to let everyone on this journey know they are not alone.
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
This week our guest is Teepa Snow. She is a leading educator in the field of dementia education and we are sure all of you have heard of her and even watched her videos. She shares with us responses to questions some of ya'll sent to us to ask her including...how to help your loved one understand he/she has Lewy Body when he/she is in denial, how to respond to a loved one who continually asks to go home when they are home and finally, how do you keep your patience with your loved one as their caregiver.
We also decided to leave a few of our hiccups in this episode that we encountered during recording. Sometimes it is a lot of "fun" doing our recordings and we could literally create a bloopers episode for you all but thought this week, we would keep a little of our hiccups in to share and confirm what we always say..we are not experts at this podcasting thing but we appreciate you all being so kind and supportive. Enjoy
Shall you wish to bless us with your support you can go to:
https://patreon.com/lewybodyrollercoasterpodcast the GoFundMe page athttps://gofund.me/c416ecb6 **Patron Shout Out
A very special shout out to Miriam and Matthew Geraci for being super monthly patrons**
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
- Gold Patrons
Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
- Platinum Patrons
Darlene Passmore-Armstrong
Thomas Connelly
Pat Crawford
Go Fund Me Shout Outs to
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather and Lewis Grossit
Geri Sera
Janeen Obis
Deb Summers
Wendy Cogan
Susan Lavoice
lJean Howell
Marcia Treffman
Thank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at: lewybodyrollercoaster@gmail.com
Until next week...
Disclaimer: We are not medical personnel nor are we offering medical advice. We are sharing our thoughts and experiences with others to let everyone on this journey know they are not alone.
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
On this episode we have another person living with Lewy Body Dementia sharing his journey. Welcome Mike Belleville. He is involved in several dementia advocacy groups and like many, was misdiagnosed at first.
We discuss everything from advocacy to what to do or not do when you decide to move form one home to another- perhaps downsizing.
Shall you wish to bless us with your support you can go to:
https://patreon.com/lewybodyrollercoasterpodcast or
the GoFundMe page athttps://gofund.me/c416ecb6 **Patron Shout Out
A very special shout out to Miriam and Matthew Geraci for being super monthly patrons**
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
- Gold Patrons
Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
- Platinum Patrons
Darlene Passmore-Armstrong
Thomas Connelly
Go Fund Me Shout Outs to
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather and Lewis Grossit
Thank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at: lewybodyrollercoaster@gmail.com
Until next week...
Disclaimer: We are not medical personnel nor are we offering medical advice. We are sharing our thoughts and experiences with others to let everyone on this journey know they are not alone.
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
As in last week's episode 16, its just Linda and Curry sharing some questions from support groups and responses from the many who continue to share ideas that will help us all through this journey with Lewy Body Dementia.
The questions we discuss this episode are:
What would you have liked your Doctor to tell you when they told you that you or your loved one has Dementia?
We share ideas on how to get loved one to shower and why loved one doesn't like to shower.
And finally, Curry shares information on dementia and incontinence.
We share comments from many with helpful suggestions and comments.
Shall you wish to bless us with your support you can go to:
https://patreon.com/lewybodyrollercoasterpodcast or
the GoFundMe page athttps://gofund.me/c416ecb6 **Patron Shout Out
A very special shout out to Miriam and Matthew Geraci for being super monthly patrons**
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
- Gold Patrons
Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
- Platinum Patrons
Darlene Passmore-Armstrong
Thomas Connelly
Go Fund Me Shout Outs to
Lisa DeRoa
Laketta Mitchell
Lori Krag
Heather and Lewis Grossit
Thank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at: lewybodyrollercoaster@gmail.com
Until next week...
Disclaimer: We are not medical personnel nor are we offering medical advice. We are sharing our thoughts and experiences with others to let everyone on this journey know they are not alone.
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
On this episode and the next episode 17, its just Linda and Curry sharing some questions from support groups and responses from the many who continue to share ideas that will help us all through this journey with Lewy Body Dementia.
The first two questions are geared more towards caregivers.
We discuss how to respond to people who visit and then say that your loved one looks great or doesn't look like he has dementia.
Do you ever get used to the diagnosis or used to what Lewy is doing to your loved one?
Finally, we discuss the questions of whether you should wake your loved one for meals and if they are really having hallucinations or seeing ghosts.
We share comments from many with helpful suggestions and comments.
Shall you wish to bless us with your support you can go to:
https://patreon.com/lewybodyrollercoasterpodcast or
the GoFundMe page athttps://gofund.me/c416ecb6 Patron Shout Out
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosa
- Gold Patrons
Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
Lenny Asuncion
- Platinum Patron
Darlene Passmore-Armstrong
Thomas Connelly
Go Fund Me Shout Outs to
Lisa DeRoa
Laketta Mitchell
Lori Crag
Heather and Lewis Grosset
Pam Hunlock
Thank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at: lewybodyrollercoaster@gmail.com
Until next week...
Disclaimer: We are not medical personnel nor are we offering medical advice. We are sharing our thoughts and experiences with others to let everyone on this journey know they are not alone.
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome to part 2 of our Making memories with Dad episode as we continue our talk with Chris Oaks while shares a little more of his dad's journey with Lewy Body Dementia during his final years. His dad, Charles Leroy Oaks sadly passed September 2020. He shares with us heartwarming tales on how they created new memories while talking about and memorializing old ones on his "Adventures with Dad" Facebook page as he shared with us all many special moments. We are sure you will all smile from listening to the heartwarming tales Chris shares during these two episodes.
Watch video until end as you see how his dad Charles Leroy Oaks had such a great sense of humor.
https://www.facebook.com/tracy.s.oaks/videos/10216152387385700
Family App was used for all siblings to know and be updated on any medicines dad took and /or any changes to medicines. It also helped keeps track of groceries needed, and notes to one another.
https://www.familywall.com
Become a supporter and patron of the podcast for a little as $2.00 a month.
Go to:
https://patreon.com/lewybodyrollercoasterpodcast **Patron Shout Out
A very special shout out to Miriam ams Matthew Geraci for being our super monthly patrons.**
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
Lisa DeRosA
- Gold Patrons
Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
Sheila Furey
Chris Oaks
- Platinum Patron
Darlene Passmore-Armstrong
Thomas Connelly
Thank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at: lewybodyrollercoaster@gmail.com
Until next week...
Disclaimer: We are not medical personnel nor are we offering medical advice. We are sharing our thoughts and experiences with others to let everyone on this journey know they are not alone.
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
This week and next week, Chris Oaks shares with us his final years with his dad who passed September 2020. He shares with us heartwarming tales on how they created new memories while talking about and memorializing old ones on his "Adventures with Dad" Facebook page as he shared with us all many special moments. We are sure you will all smile from listening to the heartwarming tales Chris shares during these two episodes.
Watch video until end as you see how his dad Charles Leroy Oaks had such a great sense of humor.
https://www.facebook.com/tracy.s.oaks/videos/10216152387385700
Family App was used for all siblings to know and be updated on any medicines dad took and /or any changes to medicines. It also helped keeps track of groceries needed, and notes to one another.
https://www.familywall.com
Become a supporter and patron of the podcast for a little as $2.00 a month.
Go to:
https://patreon.com/lewybodyrollercoasterpodcast
Patron shout-outs:
- Silver Patrons
Bonnie Ziegler-Weber
Mark Youlden
- Gold Patrons
Nancy Guerro
Phyllis Banks
Cindy
Marcia Treffman
Jay MacLean
- Platinum Patron
Darlene Passmore-Armstrong
Thomas Connelly
Thank you for listening each week.
Join our Lewy Body Roller Coaster Podcast Facebook page.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at: lewybodyrollercoaster@gmail.com
Until next week...
Disclaimer: We are not medical personnel nor are we offering medical advice. We are sharing our thoughts and experiences with others to let everyone on this journey know they are not alone.
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
This week we are excited to introduce to you Matthew and Miriam. They have such a strong outlook on life after diagnosis and Matthew explains to us all how he takes each day moment by moment and not looking long term. They were fortunate to get a quick diagnosis but it is still hard on them both and their eight children ages 5-14.
Listen as you hear how strong their love is and how they are walking their Lewy Body Journey thus far.
Thank you for listening each week.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at:
lewybodyrollercoaster@gmail.com
Until next week...
Disclaimer: We are not medical personnel nor are we offering medical advice. We are sharing our thoughts and experiences with others to let everyone on this journey know they are not alone.
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Let us introduce you to Phyllis Banks. She was as a strong advocate for her husband Bob Banks while he walked the Lewy journey and passed in June, 2020. Bob was a veteran and we all thank him and Phyllis for his service.
Thank you for listening each week.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at:
lewybodyrollercoaster@gmail.com
Until next week...
Disclaimer: We are not medical personnel nor are we offering medical advice. We are sharing our thoughts and experiences with others to let everyone on this journey know they are not alone.
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
In our last two episodes, Linda Sue shared with us all her journey with her husband Bump and Lewy. On this episode, we have Bump's two daughters sharing their thoughts and helpful advice for other adult children walking the Lewy journey with a parent.
Kelly and Angie were Bump's two daughters. One lived in same town as her dad and the other was in the process of moving to another state when her dad was diagnosed. Kelly and Angie shared how each coped with the journey. Kelly and Angie share advice and helpful thoughts for other children still walking the journey.
We cannot thank all of the family members of Bump for sharing with us his last three years.
Thank you for listening each week.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at:
lewybodyrollercoaster@gmail.com
Until next week...
Disclaimer: We are not medical personnel nor are we offering medical advice. We are sharing our thoughts and experiences with others to let everyone on this journey know they are not alone.
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome to part two of Linda Sue sharing her journey with Bump as she shares a few things she wish she knew while going through it all. She shares with us the last few days with Bump which was difficult for her but we feel it was therapeutic for Linda Sue to share with all of us and so appreciate that she did. It is our hope that what our guests share is helpful to one of you listening. This is why we are doing this podcast..to help one another through and on this journey. So, thank you again Linda Sue for sharing.
Thank you for listening each week.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at:
lewybodyrollercoaster@gmail.com
Until next week...
Disclaimer: We are not medical personnel nor are we offering medical advice. We are sharing our thoughts and experiences with others to let everyone on this journey know they are not alone.
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
This week, Linda Sue shares with us her and "Bump's" three year journey with Lewy Body Dementia from when he was first diagnosed until the end. This is a two part episode and in part one, Linda Sue shares how Bump what it was like during those three years and how she managed as she chose to keep Bump at home until the very end.
Curry asks a heavy question towards the end that he wanted to hear Linda Sue's response to as it is something he is concerned about...dying at home and then loved one staying in the same house afterwards. It was a hard question to ask and answer but one some of us may be thinking about.
Thank you for listening each week.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at:
lewybodyrollercoaster@gmail.com
Until next week...
Disclaimer: We are not medical personnel nor are we offering medical advice. We are sharing our thoughts and experiences with others to let everyone on this journey know they are not alone.
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Welcome to part two of our talk with Susan, Derek and Curry as they share their experiences and answer questions posed from caregivers. Our hope is that you gain some insight and guidance navigating this disease in order to help your loved ones or yourself.
Thank you for listening each week.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at:
lewybodyrollercoaster@gmail.com
Until next week...
Disclaimer: We are not medical personnel nor are we offering medical advice. We are sharing our thoughts and experiences with others to let everyone on this journey know they are not alone.
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
This is a two part episode of another Talk with Lewy Buddies. Susan and Derek share their journey with Lewy Body Dementia. Curry shares how he saw show-timing for the first time in another LBD patient during one on the online support group. We share our thoughts on the Robin's Wish move and then Susan, Derek and Curry share their responses to some questions posed by caregivers such as...should their care partner tell their loved one when they are scared, frustrated or sad- will that be too much for the loved one? What would you want others to know type questions were discussed? Another powerful episode where we all can learn form one another.
If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at:
lewybodyrollercoaster@gmail.com
Until next week...
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Better late than never they say...
This episode was done without any editing so you will get us in the raw. We will share the technical issues that made us record this episode differently and promise to pick up with our Talk with Lewy Buddies on a future episode.
But, even with many obstacles in our way, we were still able to share experiences and stories that we hope help some of you on this Lewy Body Dementia roller coaster journey.
Curry shares with us his experience on the last night he drove his truck, we discuss the movie Robin's Wish a bit, share words of advice and encouragement for anyone mentioning suicide and also answer a Dear Lewy question.
Thank you for listening each week. If you have a topic you would like us to discuss or wish to share your thoughts on any episode, please email us at:
lewybodyrollercoaster@gmail.com
Until next week...
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
Part 2 of our Talk with Lewy Buddies with Curry, Mike and Tom.
Show-timing is real! Why are we staring at the walls? What are we thinking when we do that? Driving still?
Come along as we continue our open and frank talk with three gentleman who have Lewy Body Dementia.
Thank you all for your positive comments on part one of our Talk with Lewy Buddies. We felt these last two episodes were so powerful and informative that our next two episodes with continue our "Talks with Lewy Buddies" but with two new individuals with LBD as we ask even more probing questions about what it is like living with this disease.
Questions, comments, or topics you would like us to discuss? Email us at:
lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
On this episode, entitled Talk with Lewy Buddies, we have three gentleman (including Curry) all with Lewy Body Dementia who share with us their journey with LBD. They also answer several questions that were given to me from other caregivers to ask.
Our time with Tom and Mike will span two episodes but we can tell you that these are by far the most powerful episodes yet as these gentleman hold nothing back and tell us what they miss most from their pre-diagnosis life, what it is like during their hallucinations and more.
If you have any comments or questions/topics you want us to discuss, please email us at:
lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
How many of you heard a doctor say "see you in six months" after an appointment or even after initial diagnosis? Curry and I have heard so many of you saying you heard these words. We talk a little about that experience and what you should do during the first six months. We also talk a bit about what forms you need to prepare to "get your affairs in order" and what each of us did in the beginning.
We also have a our first quest who shares with us how she too heard these words several times. Susan shares with us her experience getting a diagnosis for her husband- or lack of one as she is still trying to get LBD confirmed.
It is through all of us sharing our experiences that we learn from one another.
Send any questions, comments, or topics you would like us to discuss to:
lewybodyrollercoaster@gmail.com
Thanks for listening
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
During this episode, we discuss a little more about what we know LBD to be and also discuss possible symptoms of Lewy Body Dementia.
We also discuss what happened to Curry during our first episode. All of us never know when Lewy will show up or how Lewy will show up.
After recording that first episode, Curry called me and said he wanted to do it again because his wife Linda said she could tell when Lewy showed up while he was telling his own story. I told Curry that he needs to share this with our listeners and sharing how he felt is what makes our podcast authentic and real.
Curry discusses how he felt and then we discuss other symptoms that “may” occur in someone with LBD.
Finally, we introduce you all to our new “Dear Lewy” segment where we ask Curry questions and he shares how he would respond to the question as someone living with LBD.
lewybodyrollercoaster@gmail.com
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
This is a podcast done For Lewy Body Dementia patients and their families BY Lewy Body Dementia patients and their families.
In our first episode, we introduce ourselves and share our stories living with Lewy body as a means to educate and provide support for patients, caregivers AND the medical field on what LBD patients and their caregivers are experiencing.
We discuss our goals for this podcast series which will include discussing a different aspect or topics about living with Lewy Body Dementia including but not limited to pre-diagnosis symptoms to diagnosis and everything in-between and beyond including hallucinations, show-timing, night terrors and music therapy to name a few.
It is important to us that our listeners and the medical community hears from those affected with the disease by listening to how it makes them feel, what their concerns are and how we can be a help one another by sharing suggestions, advice and friendship.
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)
This is a podcast done For Lewy Body Dementia patients and their families BY Lewy Body Dementia patients and their families.
In our first episode, we introduce ourselves and share our stories living with Lewy body as a means to educate and provide support for patients, caregivers AND the medical field on what LBD patients and their caregivers are experiencing.
We discuss our goals for this podcast series which will include discussing a different aspect or topics about living with Lewy Body Dementia including but not limited to pre-diagnosis symptoms to diagnosis and everything in-between and beyond including hallucinations, show-timing, night terrors and music therapy to name a few.
It is important to us that our listeners and the medical community hears from those affected with the disease by listening to how it makes them feel, what their concerns are and how we can be a help to one another by sharing suggestions, advice and friendship.
Support the show (https://patreon.com/lewybodyrollercoasterpodcast)