Lewy Body Roller Coaster

Lewy Body Roller Coaster

Welcome to our podcast about living on the Lewy Body Dementia roller coaster- a podcast for Lewy Body Dementia patients and their families presented by Lewy Body patients and their families.You will hear firsthand, the ups and downs and twists and turns of Lewy Body Dementia from families directly affected as we will share our support and experiences on all things Lewy Body.lewybodyrollercoaster@gmail.com

Episodes

January 25, 2023 47 min

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...

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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...

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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 rec...

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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 ...

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September 30, 2022 33 min

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,...

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September 22, 2022 25 min

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 Setter...

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September 13, 2022 45 min

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 Setter...

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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, ...

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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,...

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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 enou...

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 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 t...

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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 includi...

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August 6, 2022 47 min

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 exper...

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July 27, 2022 39 min

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 experien...

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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 ot...

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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 doct...

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July 5, 2022 19 min

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.
...

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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 ...

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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...

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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 wi...

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