Lewy Body Roller Coaster

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, pl...

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...

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 toge...

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...

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:...

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 ho...

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...

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...

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 Chr...

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 walkin...

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@gmai...

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...

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 wh...

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 wa...

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 em...

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...shoul...

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 Lew...

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 powe...

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 no...

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...

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 w...

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 podca...

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 podca...