Exploring little-known LBD symptoms: forgetting how to swing a golf club or swim or sign their name.

John Butler’s Buzz & Amprion

who killed robin williams podcast with john buzz
Exploring little-known LBD symptoms: forgetting how to swing a golf club or swim or sign their name.

John Butler’s Buzz & Amprion CEO, Dr. Russ Lebovitz, MD, explore little known LBD symptoms: forgetting how to swing a golf club or swim or sign their name.

Full Show Transcript

John Butler (00:04):

John Butler here on the Buzz, and we want to investigate who killed Robin Williams. Who or what killed Robin Williams? And to talk about that, I have a special guest who is a researcher, a scientist, a doctor. Welcome to the program, Dr. Russel Lebovitz.

Dr. Russel Lebovitz (00:24):

John, I appreciate your having me today and look forward to talking with you.

John Butler (00:30):

Well, we want to talk about what killed Robin Williams, and my understanding it has to do with LBD. Can you tell us what LBD is? And I want to talk a little bit about your credentials, but tell me what LBD stands for.

Dr. Russel Lebovitz (00:48):

Sure. LBD stands for Lewy Body Dementia. And hopefully, we’ll be able to talk at depth about Lewy Body Dementia, what it is. It’s a very scary disease that we’re just starting to understand better. And the information about Robin Williams and LBD really came from his family after the fact. But now we understand. Yeah.

John Butler (01:11):

He went totally undiagnosed with this. Well, you’re the CEO and co-founder of Amprion.

Dr. Russel Lebovitz (01:17):

Amprion is the name of the company. Absolutely.

John Butler (01:22):


Dr. Russel Lebovitz (01:23):

Is our website.

John Butler (01:23):

Is the website. Amprion, is it a made up name or does it stand for something?

Dr. Russel Lebovitz (01:28):

Well, it’s interesting. It comes from two terms. What we do, and we’ll talk about this a little later, is Lewy Body Dementia, Alzheimer’s, Parkinson’s diseases are all caused by something called prions or prion-like particles and Amprion has developed technology to detect these. They were never directly detectable before and we do it very sensitively by amplifying the very small amount of prions, which are present in the brain and in other fluids. So we amplify prions and that’s Amprion.

John Butler (02:03):

Okay, I’m glad I asked. I’m glad you explained that. You also had in your background, a lot of research experience, you were with Baylor College of Medicine in Houston for like, I think 15 years or so, and then Fox Chase Center in Philadelphia.

Dr. Russel Lebovitz (02:20):

Yes. Yeah.

John Butler (02:22):

So you’ve got a lot of years looking at diseases like this, other diseases, and this one in particular, and this one is very fascinating from a layman’s standpoint and very hard to diagnose. So there’s a lot of not only laymen who doesn’t understand, there’s a lot of doctors who are not aware of it and understand it, correct?

Dr. Russel Lebovitz (02:44):

Correct. Yeah, Lewy Body Dementia or Lewy Body Disease is something that, although the description has been around for a while, we’re really just starting to understand it. And now we have tools to be able to distinguish it from the other diseases, which it resembles and those are Alzheimer’s and Parkinson’s and in some cases, it even resembles neurobehavioral disorders like Schizophrenia. So it’s a complicated mix of symptoms, but we understand now what causes it, and we’re hoping to be able to do something to cure it.

John Butler (03:19):

Okay. And most people are initially diagnosed with Alzheimer’s and so you got to kind of peel the onion to get down to find out if it’s LBD, Lewy Body Dementia.

Dr. Russel Lebovitz (03:36):

Until recently, really the only way one could determine if someone had LBD was after they died, and then to actually look at the brain under the microscope. There has been no definitive way. Amprion is developing or has developed technology that we can now do this while someone is still alive and even at early stages of the disease.

John Butler (04:01):

And that’s what happened with Robin Williams. They didn’t identify it until after he died in an autopsy.

Dr. Russel Lebovitz (04:06):

Yeah. So many patients, that’s right, with LBD are diagnosed either with Alzheimer’s or Parkinson’s most of the time, because it, unlike almost any other neurodegenerative disease, it looks like both of these, it’s almost a combination and then has certain signs, as I said, that might be mistaken for Schizophrenia. It’s a bad player. So it’s good that we’re learning about it, and the fact that Robin Williams’ family was willing to talk about it after the fact is going to help a lot of people.

John Butler (04:40):

Yeah, here’s an individual who had fame and money and loving friends around him, a loving wife who was trying to support him through all of this. And now she’s carrying on work after this, after they discovered what drove him to this. So she’s to be commended, but yeah, how unfortunate they didn’t find out about it until after he died.

Dr. Russel Lebovitz (05:04):

Well, hopefully we can change that now.

John Butler (05:09):

So give me the early warning signs for Lewy Body Dementia.

Dr. Russel Lebovitz (05:15):

Yep. So it’s a mix as we’re talking about. So you would have signs that might look like Alzheimer’s or more traditional dementias. And that might include just loss of memory, loss of what we call executive function, which is just the ability to plan your day or plan your tasks out. Also, loss of normal reasoning. And what we’re saying here is this is a change. You notice, the family notices that an individual isn’t doing things the way they used to do it anymore. They’ve had a degradation there.

John Butler (05:52):

In that regard, my first encounter with someone who had Alzheimer’s was a former, I believe he was a banker down in Houston, and I was at their home and had just met them and I talked to the wife and sitting there with several people there for some reason. And he just sat there very quietly. He was dressed in a business suit, looked like he was in the office. And she had to leave the room, and there were some photos on the wall of a couple of girls I assumed were his daughters. And so I asked him, I said, “Oh, these are your daughters? Very beautiful.” And he looks at them as if he had never seen them. And he stood there and he goes, “Yeah, this is … ” and I was taken back. I didn’t know what to say. And it took him a while to try, and he was trying to remember their names. And when she came back in the room, she explained what it was.

John Butler (06:48):

But that was the first encounter I had. And I’ve always heard that Alzheimer’s is where you … if you’re just getting forgetful, you forget where your key is. If you have Alzheimer’s you forget what the key does.

Dr. Russel Lebovitz (07:02):

No, that’s a very good description. It’s much more than… everyone loses certain recall and memory as we age. And it really is something different. So someone might know their address, but no idea how to get there from three blocks away. [crosstalk 00:07:19]

John Butler (07:19):

So, that issue, that is one symptom of Lewy Body Disease?

Dr. Russel Lebovitz (07:25):

Yes, those would be what we’ll call the cognitive symptoms, the Alzheimer’s. But Lewy Body Disease, Lewy Body Dementia has a full spectrum of what we would call Parkinsonian symptoms. The same symptoms that Parkinson’s patients have. And Parkinson’s is a very different disease in that it’s neurodegenerative, it progresses over time, but it’s really mostly movement disorders. Meaning that, talking about someone doesn’t remember the context of their family and pictures or how to get home, with Parkinson’s someone doesn’t remember how to swing a golf club or how to swim or how to sign their name. One of the earliest signs of people with Parkinson’s is movement becomes abnormal to them and they no longer have the same signature and their signature becomes very, very tiny and cramped.

Dr. Russel Lebovitz (08:20):

But, they’re fully aware of it. When we were talking about the cognitive symptoms, the gentleman you were talking to really couldn’t remember who these people were and what the context was. With Parkinson’s, you no longer can move in a way you used to be able to move. Things as simple as walking, no longer. So Lewy Body Dementia has signs of both, plus a third set of troubling signs, which really are visual and auditory hallucinations – things you might expect in someone who’s schizophrenic. They hear voices. They see things. They don’t know if it’s real or not all of the time. So it’s a complex disease.

John Butler (09:01):

Wow. So three big signs there, on that last one, I had been just kind of doing a little research on this because I found it so fascinating. I heard one story where someone who had the disease, in fact, I think he was a physician. He would wake up in the middle of the night thinking he was in a fight. He had delusional dreams. One time he said he was in a knife fight and the other time a gunfight, he actually injured his wife because he thought he was in a fist fight in the night and accidentally hit her.

Dr. Russel Lebovitz (09:38):

This is very characteristic of patients with LBD. It’s also seen with some frequency in patients with Parkinson’s where we call, these are behavioral sleep disorders, where we’re no longer able, when we have dreams, to inhibit the movements that are in the dreams. And very often both Parkinson’s and Lewy Body Dementia, some of the first signs come from the partner who suddenly can’t be anywhere near the patient when they’re sleeping. And there may be no other signs, they’re suddenly being hit and kicked. So you heard exactly right. This is a characteristic.

John Butler (10:17):

Sort of a REM sleep disorder associated with this?

Dr. Russel Lebovitz (10:21):

Exactly. It’s called RBD for rapid eye movement behavioral disorder. And it is an early sign for what we’ll refer to as a synucleinopothy and we’ll talk about that in a second, but that’s what’s shared between Lewy Body Dementia and Parkinson’s. They are caused by the same molecules gone rogue.

John Butler (10:43):

Okay. So I’m sure with any disease early detection is helpful. Is there a way to detect this Lewy Body Dementia early? Is there a test for it?

Dr. Russel Lebovitz (10:55):

There hasn’t been until now. And this is what Amprion is very pleased to be discussing today. Amprion has developed technology that allows us to measure something that underlies both LBD and Parkinson’s. And also the same concept applies to Alzheimer’s and a number of other neurodegenerative diseases. And this is the concept of prions and misfolded proteins. So what happens is that in our brain, we have lots of proteins functioning to help us keep normal activities. In a few cases, these proteins can go rogue, meaning that they actually transform into a different shape. So it’s very much like a transformer in the movies or the television shows that certain proteins change their shape and turn from being good guys to bad guys.

Dr. Russel Lebovitz (11:50):

And when that happens, it triggers a series of changes called prion-like changes. And eventually it kills cells in the brain and it kills cells, if they control movement, it leads to Parkinson’s. If it kills cells that control the way that we think and that we store memory, then it looks more like LBD. And in the case of LBD, it usually hits both of these regions in the brain. And Amprion has developed tools to detect these prion-like forms of these proteins. In particular, a protein called alpha-synuclein, which is involved in both Parkinson’s and LBD and we can detect it at extraordinarily low levels. And because of that, we can detect it very, very early in the disease and give patients at least some options, give them years to try to do something, either in lifestyle or to enter into a clinical trial to at least give them some accuracy in a diagnosis. Because so many patients are like Robin Williams where they know something’s wrong and they never get an answer in their lifetime. We can help quite a bit.

John Butler (13:02):

Yeah. Very, very sad. Of course people think about his suicide, but this is what was behind it. It’s unfortunate that he wasn’t made aware of it while he was living because he was misdiagnosed a number of times. Well, I guess all the way through until he died. So if someone feels their loved one, or maybe they are having some of these big three categories of symptoms, what should they do?

Dr. Russel Lebovitz (13:37):

Yeah. So once something is really out of the ordinary, then the general way to go through the diagnosis is first to see your general practitioner, primary care physician. They can do an examination. They usually have known the patient for a while. If they’re seeing changes that are behavioral or movement or memory related or all three, then they are likely to refer the patient and their family to a specialist, some sort of neurologist, usually either someone who has a specialty in Parkinson’s and movement disorders or dementia and memory disorders. There are very few specialists out there who really have the knowledge to put these together to do Lewy Body Dementia, but it could be either a movement specialist or a memory specialist who would say, “You know, you have signs that look like both.” And now, they can have a test performed. That test, the results would be back in approximately a week. And you can get a very, very accurate answer for the first time that there’s something going on, that is irreversible. But the earlier one has an answer, the earlier one can try to do something to slow it down.

John Butler (14:57):

Okay. What’s the name of this test again?

Dr. Russel Lebovitz (14:59):

Yeah. We call it SYNTap, but it’s really because it’s looking at misfolded synuclein and it measures strictly the misfolded synuclein. So patients who don’t have misfolded synuclein, don’t have a progressive, don’t have LBD and don’t have Parkinson’s. They don’t have these progressive neurodegenerative diseases, which can look like other things. So in that case, you’re buying someone a great deal of relief. In other cases, we can say that it’s definitively there and that these proteins, these misfolded proteins, prion-like forms are present, they’re replicating. And it’s like having a diagnosis that you have accuracy. And then, the options are to either change lifestyle and try to slow it down to enter into a clinical trial. Patients need to have clear answers before they and their families can make decisions.

John Butler (16:00):

Okay. What are some resources online where someone could go find more information?

Dr. Russel Lebovitz (16:08):

For LBD and all about what I’ve been talking about with synuclein and prions and misfolded proteins, at Amprion, we curate a lot of information that we vet and validate. So we try to be a major resource to people in understanding the generation of these diseases, what the various options are. So that is on our website at www.amprionme.com and it’s spelled A M P R I O N M E.com. That is a source of which we put a lot of time into, but other sources, there’s a Lewy Body Dementia Association LBDA, there’s the Michael J. Fox Foundation, which focuses mainly on Parkinson’s, but also on LBD, because it’s also caused by misfolded synuclein and it’s related in many ways. So those are three really useful sources that I would recommend.

John Butler (17:08):

Okay. And we’ll put those links below the video. So folks can refer to them if they didn’t get them written down. Thank you very much Dr. Lebovitz for your time and for what you’re doing in this area.

Dr. Russel Lebovitz (17:21):

Oh, thank you. And thank you for what you’re doing to help disseminate this information to people who can benefit from it. And I really appreciate your giving me the chance to speak today,

John Butler (17:33):

I hope you come back and give us some updates on the progress of your research.

Dr. Russel Lebovitz (17:37):

Love to.

John Butler (17:37):

Thank you.

Related Articles

Pill box containing Diabetes drugs that might help alzheimer's

Diabetes and Alzheimer’s

Good News! The positive impact of a safe diabetes drug that slows Alzheimer’s is exciting. Discover the remarkable findings from a longitudinal research study.

Scroll to Top