Parkinson’s Podcast: Sound Off with Jaime Umphenour & Amprion CEO Dr. Russ Lebovitz, MD, talks about how PD also stands for Persuasive Darth! Vader that is. 😄
Full Show Transcript
Jaime Umphenour (7:05)
We are happy to have joining us Dr. Russell Lebovitz, and he is the co-founder and CEO of a biotech diagnostics company called Amprion. And Dr. Lebovitz has worked as a senior scientist and research physician for over 15 years. He’s also served on the faculty of Baylor College of Medicine in Houston, in the Fox Chase Cancer Center in Philadelphia. Welcome to our program, Dr. Lebovitz, how are you doing today?
Dr. Russell Lebovitz (07:32):
I’m doing great. Thanks so much for having me.
Jaime Umphenour (07:34):
Well, thank you very much for joining us. And we have a really important conversation to have today about Parkinson’s disease, which is something that you have specialized in for quite some time. For our listeners who might not understand what it is, can you give us an explanation of what it is and maybe what we know the causes are?
Dr. Russell Lebovitz (07:55):
Sure. So first Parkinson’s disease can affect anyone. It cuts across the demographic spectrum, it affects men slightly more than women. And what happens when one gets Parkinson’s disease is that certain regions of the brain that control movement are destroyed slowly over many years. And the symptoms then turn out to be things related largely to our inability to control movement, the way we used to. And so this is a disease that is progressive. It appears first for most people in their 60s, but we know it has a long incubation period. So it probably really starts for people in their late 30s and 40s for the most part.
Jaime Umphenour (08:41):
Okay. So that was going to be one of my questions was the age demographic, because we kind of think of it as our seniors. But then the first person that comes to mind for me, I guess, of my generation is Michael J. Fox. And he was pretty young when it first started manifesting in his body.
Dr. Russell Lebovitz (09:05):
Yeah, he was 29, I believe. And again, it can happen to people at all ages, there is early onset. But I think one of the things that is important to get across today, that even for people who get this in later years, it probably begins when they are around the age that Michael J. Fox first saw symptoms. It’s just that most people don’t see symptoms until about 20 years later.
Jaime Umphenour (09:31):
Now, is there any genetic correlation, it runs in families, or is it a brain injury type of thing where maybe there is a part of the brain injured and it later manifests? Or is there anything like that?
Dr. Russell Lebovitz (09:45):
Yeah, great question and the answer for better or worse is all of the above. So probably 10% of people who come down with Parkinson’s can be linked to a genetic cause or something that we don’t know the exact gene but runs in families. The other 90% comes about, not quite at random, but it can hit anyone. And as you said, there are certain clues. People who engage in certain physical activity where they get repeated head injuries, so boxers tend to get it, football players tend to get it, soccer players tend to get it. And so repeated head injuries, but also people who have just had an infection at some point in their lives. And unfortunately, most people recover without permanent injury, but some people recover from an infection in their brain and it triggers the changes that end up being Parkinson’s.
Jaime Umphenour (10:43):
And what kind of testing does a person go through for a diagnosis? And is it something that is often misdiagnosed may be for MS or various other types of diseases?
Dr. Russell Lebovitz (10:58):
Absolutely. So right now it’s purely a clinical diagnosis and the symptoms tend to look a lot like other things. Particularly at the beginning, you nailed it with MS. Some people present with movement disorders, but also confusion. So it can be misdiagnosed as Alzheimer’s or some sort of dementia. Certain drugs that people take can lead to the same sort of symptoms that one sees with Parkinson’s. So it tends to be diagnosed clinically over a relatively long period of time. So one may suspect that this is the path they’re on, and their doctor may suspect it. But it may take 18 months, sometimes three, four, five years to say, “Yeah, that’s what this is. It’s progressed enough, that, that’s what we believe it is.” Now what Amprion, our company, has done is to develop actually a biomarker test. So we and along with others have identified a marker that probably is present in every single case of Parkinson’s, and is probably present at that period when the disease begins.
Dr. Russell Lebovitz (12:09):
And the biomarker that we look at is called alpha-synuclein, and there are some very unique things about it. Alpha-synuclein is a normal brain protein we need all of the time, but it has a unique… That it can become like a transformer in the movies or television shows, so it can flip its shape. And it flips from a good being, let’s just say, first from Star Wars like Luke Skywalker, it can flip into Darth Vader. And when it flips into its Darth Vader form, and that usually happens as we said, after some injury or some people have a genetic predisposition. But once it flips there, it’s mostly irreversible. And the worst part about it is the Darth Vader form is very good at converting the Luke Skywalker form into more Darth Vaders. So this is why it’s a progressive disease. Something happens, and you get a very small amount of this Darth Vader form, which we really refer to as a prion or prion protein. Once that starts it recruits others, it grows in amounts, it spreads from cell to cell and after 20 years or so you end up with the symptoms of Parkinson’s.
Jaime Umphenour (13:21):
And let’s talk about those early symptoms. Not that we want anybody to go self-diagnose or do Dr. Google diagnosis on themselves. But there is a list of criteria that doctors like yourself would look at as some of the early symptoms.
Dr. Russell Lebovitz (13:41):
Yeah, and these are symptoms that over time we see happen to people largely before the diagnosis is clear. So these are things that might be a clue. And again, as you’ve said, nobody should get into a panic, but nevertheless, if one of the symptoms that I’m going to describe, it has just sudden onset and it just stays the same or gets worse, then that could be in a very early sign of Parkinson’s. So the first is a very unique kind of sleep disorder. So we all have trouble sleeping. There are many, many reasons, but in this type of Parkinson’s-linked sleep disorder, one notices that in deep sleep, they start thrashing around. Sometimes even acting out their dreams, physically. And most of the time for people who have partners, this is reported by the partner because they suddenly start getting hit in the face.
Dr. Russell Lebovitz (14:34):
So this sort of movement sleep disorder is more linked to something like Parkinson’s. If it continues it looks like something is going on in the brain and it’s not just anxiety. The second is trouble moving. And again, this is, it’s not that you work out hard and suddenly are stiff and sore. This happens suddenly and people notice that things they could do very easily last year or last month, are suddenly, they have difficulty doing it. The muscles don’t move in the same way, they’re not as facile. It’s often noticed first by athletes and people who train well, but it can happen to anyone. Eventually, people find that it’s hard to move their legs. In Parkinson’s as it develops… People with Parkinson’s are often recognized because they shuffle when they walk because they can’t comfortably move their bodies the way they used to.
Dr. Russell Lebovitz (15:36):
[crosstalk 00:15:36] The third that I want to go over, we’ll call it voice changes. And these are of two types. Again, what we’re talking about here is someone who their whole lives, they talk, they walk, things that you never think about, suddenly you notice a problem. The two types of voice problems are one, that you suddenly might find that your brain is moving much faster than your mouth and your throat and your tongue can, and you just suddenly can’t keep up. And it’s hard to get things out or it’s delayed. The other is that the voice quality itself, we lose control of our vocal cords. And so, again, as I said before, for athletes who notice some of the muscle changes, singers and actors often notice the very first signs that they no longer have the fine control over their voice that they used to have.
Dr. Russell Lebovitz (16:25):
I’ve got a few more postural changes related to the inability to control our muscles. People find themselves leaning forward or back, or more often to one side. And that may be associated once you start learning with problems, with balance and coordination. The fifth that I want to discuss, really until recently, was unique to Parkinson’s and related diseases. It’s a sudden loss of taste and smell. However, over the past year, we have had a much more prevalent and even scarier cause of people losing their sense of taste and smell, which is COVID-19. But hopefully when COVID subsides and we’re back to normal, with respect to a pandemic, that sudden loss of taste and smell will trigger thinking about Parkinson’s. Dizziness or fainting, there are certain parts of the nervous system that can be damaged prior to muscles and prior to the movement disorders, so that our heart rate and blood pressure can’t be controlled as well.
Dr. Russell Lebovitz (17:30):
And we noticed that when we stand up, suddenly we’re dizzy and it hadn’t happened before. Now that can happen from medications as well. So it’s important not to panic with any of these. The last that we want to talk about here is an early symptom, it’s very common in Parkinson’s. It’s also very common in people at all stages, but it’s a sudden onset of constipation. In Parkinson’s, it’s caused for the same reasons. It’s the movement of the gut that now is no longer coordinated. It comes on suddenly and nothing seems to work. And if it persists for months, then something like Parkinson’s would need to be considered. Sorry for the long list.
Jaime Umphenour (18:11):
Dr. Russell Lebovitz (18:12):
[crosstalk 00:18:12] But these are all very interesting. So I wanted to share.
Jaime Umphenour (18:14):
It is very interesting, but you can also see where diagnosis in those first stages could be very tricky. Because you do see a lot of overlapping of symptoms with other disorders. So I can see whereas a physician, that would be almost where you’d want people to start writing down like a journal, what in the world is happening to them so that you can understand that pattern.
Dr. Russell Lebovitz (18:42):
And that’s, you also nailed it, that’s often how the diagnosis works right now. Prior to Amprion’s testing, you need time and you need to see what gets worse, what gets better. And that really is the basis. So it gets easier and easier to make a clinical diagnosis as years go by. The problem here is that Parkinson’s disease, since we’ve talked about it’s a disease of certain regions of the brain that the nerve cells die in, nerve cells, unlike almost every other cell in the body do not regenerate. So while you’re waiting, it is getting worse and worse and it’s irreversible. And we talk again if this starts in someone’s late 30s or early 40s, they don’t detect it until there are symptoms. At that point, the damage is not recoverable. Whereas if, because of these symptoms, coupled with a test like Amprion’s, one could begin to try to do something 20 or 30 years later. Even if we don’t have a cure today, if we could slow it down by 30% beginning at age 40, we might add 20 years of productive life to each person who’s on the path.
Jaime Umphenour (19:54):
I think that’s huge because it’s that quality of life that we’re after for anybody that has to deal with a chronic illness. But we’re going to take a quick commercial break and we’re going to put Dr. Russell Lebovitz on hold, and we’re going to continue our conversation about Parkinson’s disease and early detection in the new technology that is available. So stay tuned and we’ll be right back with Dr. Lebovitz.
Jaime Umphenour (23:03):
And welcome back to Sound-Off. This is Jamie Umphenour in the KPRL Sound-Off studios. And we are chatting with Dr. Russell Lebovitz and who is the co-founder and CEO of biotech diagnostics company, Amprion, as well as senior scientist and research physician for over 15 years, and a faculty member of Baylor College of Medicine and Fox Chase Cancer Center in Philadelphia. So Dr. Lebovitz you were sharing with us those early warning signs of Parkinson’s. And you had mentioned, that your company has found the biomarkers of Parkinson’s. And are there other similar brain diseases that you were able to find some of these biomarkers as well?
Dr. Russell Lebovitz (23:54):
Well, absolutely. So thanks for asking. It turns out that the story I told you before about the misfolded prions and the Transformer-like forms of these proteins underlie probably most of what we refer to as neurodegenerative diseases. And these are diseases that evolve over, as I said, 20, 30 years and destroy specific parts of the brain. So Parkinson’s happens when these misfolded proteins destroy movement centers. If we destroy parts of the brain associated with memory and learning, then we see dementia and Alzheimer’s, and other forms of dementia are known to be associated with this sort of phenomenon. Another disease that people may not be as aware of, a disease called Lewy Body Dementia. Which is really in many ways a cross between Alzheimer’s and Parkinson’s, you get the symptoms of both. And in fact, that was what took the life of Robin Williams. So there are a number of these diseases and they all share this common mechanism of these transformed prion proteins.
Jaime Umphenour (25:07):
Now, what about prevention? Are there things that people can do to hopefully prevent the onset of some of these brain diseases?
Dr. Russell Lebovitz (25:19):
Well, pure prevention, the data isn’t in, because it’s hard until we’ve had testing like ours, it’s hard to know who has it early and to follow. But what we do know is that you can certainly modulate lifestyle changes. There’s plenty of data that if you start early enough and you change your diet and you change your exercise routines, and you do the same things you would do, fortunately for heart disease and everything else that makes you healthy, that this clearly can slow down the progression of the disease. So for people who know they’re on the path, they would need to be as aggressive as possible in having a healthy lifestyle.
Dr. Russell Lebovitz (26:01):
The other types of things that one could do if you know early. And we’d like to say that early diagnosis empowers early prevention. So that’s really what’s important. So if you knew, let’s put it this way – if I knew that in 15 years, I might have a problem where I can no longer travel and there are certain things I can’t do, I might want to change my schedule and have time now to do all of those things on my bucket list. That’s certainly something that would be useful. I would change my lifestyle, I would try to be even more healthy, although I certainly tried to be as healthy as possible.
Dr. Russell Lebovitz (26:43):
The last thing that one can do that’s proactive is, that there are more than 516 clinical trials going on in the United States for Parkinson’s disease. And some of those relate to drugs, some to devices, some to lifestyle. And I would recommend that people who know early that they are 15 or 20 years away from having this sort of a problem, look into getting involved with one of these that fits their comfort zone. But this is how we learn about things. If people don’t join clinical trials then we don’t get good information.
Jaime Umphenour (27:21):
Very interesting suggestion because we’ve heard so much about clinical trials this last year, but this is how we make progress in diseases like Parkinson’s, and so many others, is people being willing to try something and see what happens. As far as treatment, if you’re diagnosed with Parkinson’s and hopefully in the early stages. But even if it’s progressed a bit to a more uncomfortable stage, is it mostly medication type of treatment that is available?
Dr. Russell Lebovitz (27:56):
Yes. Once the disease is diagnosed… What that means is that the regions of the brain we were talking about before are mostly irreversibly destroyed. However, it’s possible to compensate for that with certain drugs. And so for Parkinson’s, there have been drugs that work, particularly at the early stages of clinical disease, that we’ve known about for more than 20 years and people take those. Over time, as the disease progresses, the drugs tend to be less effective, but they can buy four or five years of greatly enhanced life and mobility. So there it is certainly, not that there is nothing at all, it’s just there isn’t a cure, there isn’t anything that reverses damage right now. And even these drugs that help with the symptoms don’t really slow down the progression or make the disease better.
Jaime Umphenour (28:56):
Okay. Well, it’s hopeful though that now we have a way to have early detection and that’s with your company called Amprion. So thank you so much for educating us on this very serious chronic illness that’s out there. And so we just can-
Dr. Russell Lebovitz (29:12):
Yeah, and [crosstalk 00:29:12] maybe.
Jaime Umphenour (29:12):
Dr. Russell Lebovitz (29:14):
If people want more information about Amprion, or we have lots of resources about Parkinson’s, they can go to https://amprionme.com A-M-P-R-I-O-N-M-E.com, or on social media @amprionme, A-M-P-R-I-O-N-M-E, just for the information, sign up for newsletters. We’re trying to get the best information to people possible.
Jaime Umphenour (29:40):
Thank you much. [crosstalk 00:29:43]