Lewy Body Dementia Podcast Recorded February 23, 2021
Listen to this insightful podcast brought to you by the Lewy Body Roller Coaster. The hosts are Curry Whisenhunt, an LBD patient, and Linda Szypula, a care partner for her husband who lives with Lewy Body Dementia. In this episode, they interview Russ Lebovitz, CEO & Cofounder of Amprion.
Major highlights include:
10:50 – We always say that when you meet one Lewy body patient, you’ve only met the one Lewy body patient, because no two people have the same symptoms
11:13 -What’s most troubling is it usually takes up to two years or more and many tests to get a probable Lewy Body Dementia diagnosis. So the thought of someone developing a test that could determine Lewy Body Dementia early would definitely be a big game-changer for so many
15:30 – I feel like this test will give people back those lost years
21:34 -A drug that might have very little benefit very late might have a ton of benefit early. And just think about a drug that just delays the onset at an early stage by 10 or 20 years makes all the difference in the world. So early diagnosis to neurodegenerative diseases is absolutely the key. It’s the key to developing better drugs. It’s the key to better self-management. It’s the key to more self-awareness.
47:00 – First, you have to reach people…and then their stories…lead to the insights that lead to the advances.
50:50 – And it’s time that we pool all of our resources together to make this a top priority because it affects every one of us through our families and ourselves.
Scroll further down to read the full transcript.
About Lewy Body Roller Coaster Podcast
Started by an LBD patient and an LBD care partner, the Lewy Body Roller Coaster is a 1-hour podcast serving the global community of LBD patients and care partners.
Started in September 2020, the LBD podcast has over 8,500 downloads from 45 countries! This high number of downloads speaks to the fact that there is a void for a caring supportive community for people who suffer from LBD. So many people are searching for information on this mysterious disease! For us, it is sad so many people are listening, but we are grateful that we can do this to share stories, so others don’t feel they are alone on this journey.
We will continue to do the podcast as long as we can because it lets others know they are not alone on this journey-this roller coaster of a ride none of us wanted to be on, but I feel it is important to share and help others as much as we can.
Meet the Hosts
Curry had been an otr (over the road) truck driver for years, Curry dealt with 3 types of hallucinations: olfactory, then auditory, and finally visual hallucinations before being diagnosed around 2007. These hallucinations kept increasing in severity and frequency.
He also had severe shortness of breath (that finally made him seek medical attention) that no one could explain, even after many tests on his heart, lungs, and then brain nothing was found that would be causing these problems.
Finally, after 8 months of testing, he was finally diagnosed by a new doctor in 2016 with Lewy Body Dementia at age 56.
Curry’s new doctor spent a year trying to find medications and proper doses that worked best for Curry. The medications have worked well for him and he has learned how to “live well with Lewy Body Dementia.”
Now Curry’s mission is to teach others about this disease through his Facebook group “Our Journey with Lewy Body Dementia” and the podcast “Lewy Body Roller Coaster,” which he co-hosts with Linda Szypula.
Linda Szypula, Ed.D.
I was a Science teacher in grade 8 and also an adjunct professor for two universities teaching graduate education classes – the University of Phoenix and Southern New Hampshire University. I have a BS in Education, an MS in Geosciences, an MS in Educational Administration, and a Doctorate degree in Educational Leadership. My husband, Jim, was diagnosed with LBD in 2017 at age 58. This is after three years of trying to get a diagnosis and after first being told he had Alzheimer’s. Being a Science teacher, I kept researching my husband’s symptoms during all his testing and kept a journal of new symptoms. I knew after the first diagnosis that his symptoms did not fit those of just Alzheimer’s. With more testing and sharing my research and notes, he was then diagnosed with LBD.
Because of my frustrations with how long it took my husband to get diagnosed, I felt I could not take this disease and all it brings sitting down. Curry would post on his page how he was feeling each day living with Lewy Body Dementia. This helped me better understand what Jim must be feeling and going through. So, I reached out to Curry and asked him if he would like to do a podcast to share his story so others can share their experiences as a way to help each other. Neither of us knew anything about doing a podcast. So I spend about four months researching and listening to videos and podcasts on how to do a podcast. With the help of our son, we manage to do a weekly podcast where we have caregivers or those with LBD on to share their journeys.
Recently, Dr. Lebovitz from Amprion came on to share with us the new test coming out that will help so many get an early and proper diagnosis and get the right medicines to help symptoms.
Other LBD Support Meetups via Zoom
In addition to the podcast, Curry and Linda also conduct three support group meetings via Zoom.
- Mondays and Fridays 11:30 AM EST for caregivers and people living with LBD
- Saturday’s at 3 PM PST
Curry and Linda conduct a support group zoom meet for spouses only, which I run with another spouse Jax Brown.
We will soon start one for just those with LBD which Curry will run by himself and with the help of another person who has LBD. Only those living with this disease truly understand what each of us is going through.
LBDA.org also does a support group on Wednesday at 12 PM EST for just those living with LBD run by a member of the LBDA staff. Linda’s husband and Curry also attend this group because we feel that there can’t be too many support groups for this disease. The more we all can share and learn from and with one another, the better life we all can continue living.
Podcast Full Transcript
Okay, so this week is going to be a little different than past episodes. Normally, I throw it over to Curry right now and he introduces our guest. But this week I wanted to jump in first and say that we are very excited for you all to hear what our guest today has to share with us. He does not have Lewy body Dementia, nor does he have a loved one with Lewy Body Dementia, but he has some information to share with you all that is going to be… We feel like it’s going to be a game-changer for anyone seeking a diagnosis and/or those with a probable Lewy Body Dementia diagnosis.
Dr. Russell Lebovitz (04:46):
Amprion is really dedicated to understanding neurodegenerative diseases. We feel that the first step in being able to manage these diseases is to understand them, to know who has them to understand how it evolves. And then we can use that knowledge both to help people along their journey, but just as importantly, to work with drug companies, device companies, people who are dedicated to now slowing the disease or stopping the disease.
We’ve been sharing people’s experiences with Lewy body Dementia over the last six months and we always say that when you meet one Lewy body patient, you’ve only met the one Lewy body patient, because no two people have the same symptoms, it seems.
What’s most troubling is it usually takes up to two years or more and many tests to get a probable Lewy Body Dementia diagnosis. So the thought of someone developing a test that could determine Lewy Body Dementia early would definitely be a big game-changer for so many others.
Dr. Russell Lebovitz (12:43):
What our test does is using a tiny bit of spinal fluid, really a drop, we can accelerate exactly what happens in the brain from years and decades to hours and days. And so that’s really what the test is about. And in our tests, if you have no prion form, then nothing happens. If you have even a tiny amount, maybe even one or two particles of prion-like misfolded synuclein, we can detect it.
I was stunned there was actually a test to detect this disease. So families don’t have to wait until after an autopsy is done to confirm Lewy Body Dementia.
We’ve got people in our group that are in their fifth year of trying to get a diagnosis, and I was lucky mine took eight months. But the average is two years as you well know. And this is going to make such a big difference in people’s lives. I’m really excited about it.
I feel like this test will give people back those lost – those that are seeking a diagnosis now – those lost years, because we’ve heard from so many people that… Which we’re going to talk about little later, that they’re just misdiagnosed. Curry was dying of four different things. But anyway, this is going to be a game-changer.
Dr. Russell Lebovitz (19:51):
Is there a stage that I would say that someone on this path shouldn’t have this information?
Dr. Russell Lebovitz (20:00):
Not that I know of, because at any stage, knowing… The devil you know is much easier to deal with than the one that you don’t know, and anxiety and uncertainty are terrible things for anyone to have to go through. I hope that that’s a reasonable answer to the first part. Really anyone who believes or their physician believes, their caregiver believes are on this path, we can help a lot. I believe at every stage.
Dr. Russell Lebovitz (20:49):
One of the things that we believe so firmly is going to be the game-changer here is early diagnosis. The earlier one knows what one has, the more options one has.
Dr. Russell Lebovitz (21:02):
And we believe it’s going to be critically important to developing drugs that actually work because as we can talk about the later the stages, the more permanent damage there is that can’t be recovered. Whereas at the earliest stages, the permanent damage may be minimal.
Dr. Russell Lebovitz (21:33):
At early stage, really a drug that might have very little benefit very late might have a ton of benefit early. And just think about a drug that just delays the onset at an early stage by 10 or 20 years makes all the difference in the world. So early diagnosis to neurodegenerative diseases is absolutely the key. It’s the key to developing better drugs. It’s the key to better self-management. It’s the key to more self-awareness.
Dr. Russell Lebovitz (23:48):
Before we believed that all synuclein misfolded into one form, now we know it misfolds into two different forms. And the important thing that leads to this question is, it’s pretty clear that Lewy body disease and Parkinson’s right now seem to share one form, so they’re really similar diseases.
Dr. Russell Lebovitz (25:11):
The test right now as it stands detects both forms. So whether we have an MSA patient, a Multiple System Atrophy patient, an LBD patient, or a PD patient, we can get a positive result. However, if it’s important to distinguish between them, we can do a second test following to try to look at the actual structure of the misfolded synuclein and therefore the strain.
Dr. Russell Lebovitz (29:35):
We have to have better answers for people who see that this happens multiple times in their family, and we have to sort out what’s genetic and what’s epigenetic.
Dr. Russell Lebovitz (36:43):
We found that synuclein was just a perfect biomarker for this, where we could provide a lot of help and do it at scale and get it right every time.
Dr. Russell Lebovitz (37:02):
To develop a test is a very tricky thing to be able to do a diagnostic test. It pretty much has to work 100% of the time. Where in a research lab, something just has to work once under the right conditions. But we can’t have it work once and wait for those right conditions, so it takes a commitment to believing that this is something important, putting a lot of time and money into developing a form of a test that works and stands up to regulatory requirements.
Dr. Russell Lebovitz (37:37):
And so I think that I should say that those of us at Amprion believe that this is so important and that this is critical for helping people and developing better drugs that we made that commitment where other people weren’t willing to commit to making, having a test that works.
What’s happened with the podcast is we’re still kind of amazed because I think to date there’s 8,000 downloads and now it’s 42 countries are listening, which I always say once in a while, I’ll give this information. And if we were doing the podcast for ratings, we would be doing great. But we always say, I am thankful that we’re able to do it, but it makes me sad that so many people are just looking for information about this disease.
Dr. Russell Lebovitz (43:04):
Will insurance cover this? The answer is eventually absolutely. But as you know in the United States, what insurance companies cover is completely at the discretion of the insurance companies. Now, since many of the people, even though we believe in early diagnosis, the reality is most people come to this journey later in life. And so if they are in the Medicare group, then certainly there’s a path for us to get Medicare reimbursement, and we are already on that path.
Dr. Russell Lebovitz (43:39):
And we find that with that validation, it gets easier for insurance companies to also cover it. But one thing I will say here, look a test, since it’s at the discretion of the insurance companies, insurance companies need to hear from patients, caregivers, and doctors that this is important. And when they hear that it’s important, then they are more likely to cover it. We want to offer this to everyone and have it fully covered.
Dr. Russell Lebovitz (44:09):
And so best way is just get the word out that this is important if you believe it’s important. And my experience is that insurance companies really listen to patients, caregivers, and doctors, and that is how they make their decision. They don’t want to hear from me saying it’s important, they want to hear from you saying it’s important. And I hope you believe it is, we believe it is.
Dr. Russell Lebovitz (46:47):
It’s very clear to me just in listening to the two of you, and listening to a few of the podcasts, and starting to follow that what you’re doing is… This is how change gets done.
Dr. Russell Lebovitz (47:10):
It’s the stories that lead to the insights that lead to the advances.
Curry, who doesn’t drink, was first told that he was an alcoholic and then he had brain cancer and lung cancer, and-
Lung cancer, and heart failure, and everything.
One lady said that a doctor told her, “Oh, it’s just part of menopause,” or even, “It’s nothing to worry about. It’s just part of normal aging.” As you said, we’re very passionate about making change and working with whoever we need to work with and collaborating to let people hear those living with – that are alive with Lewy body – let them tell their story.
Getting the early diagnosis with a test like this, it’s going to save people from losing several good years that they normally spend trying to get a diagnosis.
Dr. Russell Lebovitz (50:39):
We’ve got to organize ourselves to make people aware, doctors, government – this is getting to be the biggest problem that we face as our society ages – are neurodegenerative diseases. And with treatments, I wish I could say we were above zero, but we’re not. And it’s time that we pool all of our resources together to make this a top priority because it affects every one of us through our families and ourselves.
Clinicians and researchers use the "one-year rule" to help make a diagnosis. If cognitive symptoms appear at the same time as or at least a year before movement problems, the diagnosis is dementia with Lewy bodies.What are the changes to the brain caused by dementia with Lewy bodies? ›
Lewy body dementia causes a progressive decline in mental abilities. People with Lewy body dementia might have visual hallucinations and changes in alertness and attention. Other effects include Parkinson's disease signs and symptoms such as rigid muscles, slow movement, walking difficulty and tremors.How often is Lewy body dementia misdiagnosed? ›
80% of LBD patients are misdiagnosed
Lack of a diagnostic test and the fact that LBD presents so many symptoms that are associated with other conditions means the disease is very difficult to spot.
Lewy body dementia can occur alone or along with other brain disorders. It is a progressive disease, meaning symptoms start slowly and worsen over time. The disease lasts an average of five to eight years from the time of diagnosis to death, but can range from two to 20 years for some people.Can Lewy body dementia go into remission? ›
Remission to near-normal cognitive function can occur spontaneously in the absence of clear environmental triggers suggesting that fluctuating cognition in Lewy body dementia is internally driven and that dynamic changes in brain activity play a role in its aetiology (Ballard et al., 2001; Sourty et al., 2016).How do you slow down Lewy body dementia? ›
Currently, there's no known way to stop the progression of the disease. However, there's always hope. Research on dementia with Lewy bodies, Alzheimer's disease and Parkinson's disease with dementia are ongoing.What causes death in Lewy body dementia? ›
Failure to thrive is the most common cause of death in DLB (65%), followed by pneumonia/swallowing difficulties (23%) .What drugs should be avoided with Lewy body dementia? ›
Patients who have dementia with Lewy bodies should not be given the older, typical D2-antagonist antipsychotic agents such as haloperidol (Haldol), fluphenazine (Prolixin), and chlorpromazine (Thorazine). Patient records should document this and caregivers should be informed.What causes Lewy bodies to build up? ›
It's caused by the decay of the tissues in the brain. People with DLB have a buildup of abnormal protein particles in their brain tissue, called Lewy bodies. Lewy bodies are also found in the brain tissue of people with Parkinson disease (PD) and Alzheimer disease (AD).What can be misdiagnosed as Lewy body dementia? ›
LBD is frequently misdiagnosed as Alzheimer's disease, especially in the early stage. Over time, changes in movement, hallucinations or RBD can help distinguish LBD from Alzheimer's disease. Lewy body dementia (LBD) is an umbrella term for a form of dementia that has three common presentations.
Imaging techniques like computerized tomography (CT) scans and magnetic resonance imaging (MRI) scans have been around for many years and have been vital tools in diagnosing a very wide variety of diseases. While neither is diagnostic of Lewy body dementia (LBD), they can assist the physician in diagnosis.Who is at risk for Lewy body dementia? ›
Age: Advanced age is the greatest known risk factor for Lewy body dementia. Lewy body dementia typically presents between the ages of 50 and 85, though it has been diagnosed in younger individuals.What happens at the end of Lewy body dementia? ›
Like others with LBD, muscle weakness may affect his swallowing ability. This can lead to aspirating food or liquid, resulting in pneumonia, a common cause of death in advanced dementia. Even without problems with aspiration, he'd probably succumb to pneumonia or heart failure after months of being bedridden.Is Lewy body dementia aggressive? ›
One of the biggest challenges facing seniors with LBD and their families is the fact that symptoms of the disease tend to worsen and improve erratically. Periods of mental fog, aggressive behavior, movement issues and vivid hallucinations can last seconds, minutes, hours or days.Does Lewy body dementia run in families? ›
A growing body of evidence suggests genetics may play a role in the disorder and that some cases may be inherited. Scientists have found that some of these rare cases can be caused by mutations in the gene for alpha-synuclein (SNCA), the main protein found in Lewy bodies.Can you see Lewy bodies on an MRI? ›
HealthDay News — Magnetic resonance imaging (MRI) of the brain may aid diagnosis of dementia with Lewy bodies versus Alzheimer's disease, according to a study published online Nov. 2 in Neurology.Who is at high risk for Lewy body dementia? ›
Age: Advanced age is the greatest known risk factor for Lewy body dementia. Lewy body dementia typically presents between the ages of 50 and 85, though it has been diagnosed in younger individuals.What are the 10 symptoms of Lewy body dementia? ›
- Changes in thinking and reasoning.
- Fluctuating cognition that is delirium-like.
- Recurrent well-formed visual hallucinations.
- REM sleep behavior disorder that involves acting out dreams.
- Spontaneous parkinsonism with slowness of movement, rest tremor, or rigidity.
- Fluctuating alertness and thinking function.
- Repeated visual hallucinations.
- Parkinsonian symptoms.
- REM sleep behavior disorder, in which people act out their dreams during sleep.