Lewy Body Roller Coaster

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....

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 to...

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 t...

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...

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 las...

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 i...

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. Sh...

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 GoFun...

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 inc...

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/lew...

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 o...

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 w...

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 dia...

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 t...

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 f...

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...

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 me...

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 ma...

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 C...

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 f...

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 want...

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...

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...

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 o...

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 h...