Parkinson’s Brain Health Podcast: Overnight America with Ryan Wrecker & Amprion CEO, Dr. Russ Lebovitz, MD, discuss early PD symptoms such as voice changes.
Full Show Transcript
Ryan Wrecker (00:01):
Welcome back to Overnight America. Joining us now is a brain researcher talking about some of the early warning signs of Parkinson’s disease, Dr. Russell Lebovitz. Thank you for coming on to KMOX.
Dr. Russell Lebovitz (00:14):
Thank you for having me.
Ryan Wrecker (00:16):
And I’m curious, what year, or what age should you start looking for signs in an individual?
Dr. Russell Lebovitz (00:22):
Well, that’s a great question. Parkinson’s itself begins to appear in people in their 60s, but we now know that it has a long incubation period. So the earliest signs might appear in people in their late 30s, that early, and then at any point after that.
Ryan Wrecker (00:41):
So maybe you can talk about Parkinson’s, what is it and how does it affect the body?
Dr. Russell Lebovitz (00:46):
Sure. Parkinson’s is a disease mainly of certain regions of the brain that control movement. And so when people think of Parkinson’s, the classic signs are people who were otherwise normal, who start having shaking, or who find themselves that their motions become very stiff. So in the full-blown form, that’s the classic form of Parkinson’s, but today, maybe we can talk about some of the earlier signs that would eventually give someone a sign that they’re on that path.
Ryan Wrecker (01:24):
And I think when people think of Parkinson’s, probably they think Michael J. Fox, that’s one of the most well-known cases.
Dr. Russell Lebovitz (01:31):
Absolutely. He is… Yeah. [crosstalk 00:01:35].
Ryan Wrecker (01:35):
I know a colleague in radio that later in life, just in the last couple of years started showing symptoms and was diagnosed with Parkinson’s. And so one of the things I learned, because you think about Michael J. Fox and the different movements, and he was telling me that the movements are a by-product of the medicine you take. And he was telling me that some things I never really knew about Parkinson’s. And I think that when all you know is a celebrity that may have it and you see the outward signs, you really don’t know much else about it, all you do is see the shaking and you think, “Okay, that’s all there is to it.”
Dr. Russell Lebovitz (02:10):
Yeah. It’s a double edged sword in that you have a problem, you take a drug, the drug helps to solve that problem for a while, but it can cause other problems. So you start with having a problem moving, and the drug, which works very well for short periods of time to help that, over time starts to cause unwanted movements. And that’s what your friend was talking about.
Ryan Wrecker (02:36):
So when we start talking about this, do we really know why someone would start showing signs? Is there anything that triggers it or is it just something that happens and we have no idea why?
Dr. Russell Lebovitz (02:47):
No, I’d say that now we have a pretty good idea of what happens. And what we’ve learned is that all patients with Parkinson’s end up with a protein, a normal protein in their brain called alpha-synuclein, for a variety of reasons undergoes a conversion where a small amount of that normal protein misfolds, it converts into a misfolded form. And that misfolded form takes on two new powers that are not particularly good for us. The first is a small amount of misfolded alpha-synuclein in the brain, has the power to convert large amounts of normal alpha-synuclein into the misfolded form. So it causes a chain reaction. And the second is, unfortunately the misfolded form of alpha-synuclein is bad for brain cells. Over time it damages and kills them. And it turns out that the misfolded alpha-synuclein is particularly problematic for cells in the brain that control movement.
Ryan Wrecker (03:51):
So is there a test for it early on where you could tell if that process is going on in the brain?
Dr. Russell Lebovitz (03:57):
Yeah, until recently, the misfolded form of alpha-synuclein in many ways is identical to the normal form, it has the same structure, it’s made by the same gene, but it just has a different shape. And the reason we’re talking today is research done by my colleagues at Amprion, which is a company developing a test to measure this misfolded synuclein specifically, we now are offering a test that can detect misfolded synuclein, and the presence of misfolded synuclein really indicates that one has Parkinson’s and other, or other related diseases.
Ryan Wrecker (04:40):
Yeah. So it’s almost like there’s a chain reaction. So if you start to see it early on, you realize that it’s just going to continue down that process. Is there anything detecting it early could do to help along the line, or all of it, is it just giving you an early sign that you’re more susceptible to it in that this is what your future is?
Dr. Russell Lebovitz (05:00):
Yeah. Well, what we would like to say is that in many diseases, early detection empowers, but particularly in something like Parkinson’s. So the first thing is that what if you knew now, that in 15 years, you weren’t going to be able to travel anymore, you might not be able to work anymore, you might not be able to move the same way. First thing is that you might not want to put off certain things. If you’re putting off travel, you might want to do it earlier. The second is that knowing now, when you have very few signs by detecting it early, you have the power to make changes in lifestyle, the ability to change diet. There’s some data that diet and exercise might help. And third, and maybe most importantly, there are a number of clinical trials going on at any time. So if you have very early signs and you’re still mostly intact, you have the power as a patient to say, “I want to enroll in these trials. I want to not only help research, but I’d love to be part of finding a drug that actually slows or stops this.”
Ryan Wrecker (06:07):
Wow. So you talk about over at Amprion, and you’re the co-founder, CEO, and Dr. Russell Leibovitz joining us, what’s the accuracy of these tests? I mean, how well can you detect this?
Dr. Russell Lebovitz (06:20):
Oh, with misfolded synuclein, the way our test works, it’s an amplification test. So we can detect really small amounts of this. So if it’s present, even enough at very early stages, we’ve certainly been able to detect it in people more than 15 years prior to having any objective sign of the disease. So, it is very effective, it’s very accurate. And we think that it can really play a role in helping people to make better decisions. And it can also help drug companies to develop better drugs now that we can measure who has the disease at all stages, particularly the early ones.
Ryan Wrecker (07:03):
Wow. So I’m just curious, how does this work? Is it a saliva test, blood test? What do you have to look at?
Dr. Russell Lebovitz (07:08):
Well, in this case right now, the test that is the most accurate by far uses one drop of spinal fluid. And it’s not the hardest thing to get, but with spinal fluid, you’re really measuring what’s going on in the brain. And so that’s what gives us the advantage of being able to measure a decade or more before there are really clear signs of damage.
Ryan Wrecker (07:33):
Yeah, that’s really interesting. So when you said in the late 30s, because that’s where I’m at right now in age, where you can start to see some of these different signs, and you said that there’s certain things that you see that are pretty typical of people that may show symptoms. What are some of those different signs that people should be looking for? And maybe you can give me an idea of what it would look like if you’re 37 showing these signs versus 67 showing these signs?
Dr. Russell Lebovitz (07:59):
Well, let’s talk about what the signs are because the early signs, one of the problems with Parkinson’s is that certainly at early stages, the signs you have overlap with normal aging, they overlap with side effects of other drugs. So none of the early signs necessarily prove that you have this. So you’ll listen to these lists and you’ll say, “Oh, I could have these.” Just because you have these signs doesn’t mean that you have Parkinson’s, but these are signs that appear more frequently in people with Parkinson’s. So the first is sleep disorders, but the sleep disorders associated with Parkinson’s are really specific. And they really, it’s not so much that you can’t sleep, it’s that when you’re sleeping, at certain stages of sleep, that you start moving wildly. So people notice that they’re thrashing around and hitting their partners, some people get up and sleepwalk, but you’re moving around.
Dr. Russell Lebovitz (09:00):
And what you’re dreaming, seems to lead to motion. And so that’s the first, is this, what we call a rapid eye movement behavioral disorder, when you’re sleeping, you move around. Second is, just suddenly having trouble moving, you might feel stiffness. Now of course, lots of people are stiff for a variety of reasons, but Parkinson’s type stiffness, it will progress over time. So stiffness and tremors, shaking. Third are voice changes. So people’s voice, it’s just not as strong. It sounds like your voice just is wavering, it’s not as strong, partly because the motor control of your throat and your vocal chords may be impacted early on. Posture changes, people may find that suddenly they’re leaning to one side and it’s very hard to straighten up. The last two are really… The last three I’ll go through.
Dr. Russell Lebovitz (10:03):
One is the loss of the sense of smell and taste. That used to be something that we didn’t talk about all the time, but unfortunately, over the last year and a half, that’s now a fairly common sign also for COVID-19. But before COVID 19, it was rare that someone would suddenly lose their sense of smell. And that’s associated with Parkinson’s. Some people find that they’re dizzy or they faint when they stand up quickly. Again, that could be due to medications, but it’s also an early sign of Parkinson’s. And last, actually the most common sign of Parkinson’s for people who eventually end up with full-blown disease is years before, for no good reason, they have an onset of constipation that just starts and doesn’t end and there’s no good reason for it. So what I want to point out is all of these early signs, none of them are absolutely diagnostic. And so with that alone, you might be concerned. And if you had two or three of them, you might start to have a concern and see a doctor.
Ryan Wrecker (11:11):
So if you have, you said two or three of them, and you said that it starts in the late 30s, is when you could start seeing some of these where it becomes a concern?
Dr. Russell Lebovitz (11:20):
Right. And why I said two or three is, all of these are somewhat nonspecific, but over time you start to see that there’s a pattern here. So clearly if you had more than one of these, you might at least begin to ask, “Is there something going on?”
Ryan Wrecker (11:36):
Mm-hmm (affirmative). Dr. Russell Leibovitz joining us here on Overnight America. And if people wanted to learn more about this, do you have a website or someplace that people could go?
Dr. Russell Lebovitz (11:46):
Absolutely. And thanks for asking, we have a website that provides a lot of information on our tests, on the science behind it, and on just everything one might want to know about these diseases. And the site is www.amprionme, A-M-P-R-I-O-N-M-E.com.
Ryan Wrecker (12:09):
Okay. And one of the things you mentioned about finding out early, and know that it will give you a little bit of an idea of some of the lifestyle changes or things that gives you the ability to make better decisions as you age, one of the things I was curious about, when we go back to the Trump administration, he did something that I thought was wonderful, which was the right to try. So if you find yourself in a situation where the medical diagnosis is not so good, before you really didn’t have a lot of options in some cases, but when you open up the idea that you can try more experimental, or you can try some things that normally would have been turned off to you, it led to a possibility of at least giving you some hope. So when you talk about clinical trials coupled with the right to try, does that really open up a lot more possibilities for people now that we know more about Parkinson’s than we did, let’s say, the possibilities 10 years ago?
Dr. Russell Lebovitz (13:06):
Oh, absolutely. So enrolling in a clinical trial is something, especially for a disease where there are no known cures, is something that can help the individual, it can help all of us. And so whether it’s through right to try or because one has a diagnosis through someone like Amprion that says, “Look, I know I have this disease,” that might even help qualify for the clinical trial, even outside of right to try. But one way or another, the way we make advances in diseases like Parkinson’s is through clinical trials. So any way that we can enhance those is good for all of us.
Ryan Wrecker (13:47):
You mentioned we don’t have a cure yet. Is it possible to find a cure to Parkinson’s, is it something that is still trying to be developed and how far away do you think we may be to actually having something that could treat it to a point where people can get their lives back?
Dr. Russell Lebovitz (14:03):
Sure. So as we discussed earlier that a large part, we know one common theme in Parkinson’s is this chain reaction of misfolding of synuclein. So there are a number of companies that are targeting misfolded synuclein with various drugs. And so, they’re in trial now. And it’s going to take a little time to get it exactly right, but I believe that within the next 10 years there’ll be drugs on the market that are shown to have a significant benefit for patients. And so if a drug is going to be on the market in 10 years, that drug may be starting a clinical trial right now.
Ryan Wrecker (14:44):
Wow. What’s your optimism for that? What’s your optimism that in your lifetime, you’ll see some life-changing discovery in Parkinson’s?
Dr. Russell Lebovitz (14:55):
I’ll be very disappointed if we don’t have something that makes a difference in people’s lives within eight to 10 years.
Ryan Wrecker (15:03):
Great. Amprion co-founder and CEO, Dr. Russell Lebovitz. And by the way, if people wanted to look up some of your research and the things that you’re doing when it comes to testing, what’s your website again?
Dr. Russell Lebovitz (15:13):
It is www.amprionme, A-M-P-R-I-O-N-M-E.com.
Ryan Wrecker (15:21):
So what happens? Like someone goes to their doctor and their doctor may agree, “Okay, you’re showing some of these signs.” Does the local doctor take a sample and send it to your labs, is that how it works?
Dr. Russell Lebovitz (15:32):
Correct. And so within a few days, we would be able to tell them definitively whether they have misfolded synuclein in their brain, and therefore that really is diagnostic of the disease. Until that point, what we’ve been doing, we’ve sort of been flying blind, even the best doctors. It’s all based on clinical symptoms, and clinical symptoms for Parkinson’s overlap with clinical symptoms for a number of other things. So misdiagnosis, even in the best hands, using clinical data alone just hasn’t been adequate. So if we have a biomarker that says, “Yes, there is Parkinson’s,” or, “No, there is not misfolded synuclein, and therefore Parkinson’s,” it can benefit the patient immediately.
Ryan Wrecker (16:19):
So is this primarily looked at as something that insurance would cover if they went to their doctor and they had some concerns?
Dr. Russell Lebovitz (16:25):
Well, it’s a new test, and the procedures for doing this take some time, but we are quite convinced. We have very strong data. All of our data is shared and made public. It’s all peer reviewed, published, meaning all of our data is vetted by people outside of the company. It’s already very strong, it will only get stronger, and that will lead to reimbursement, but it’s not something that happens overnight. We have a mechanism to make sure that things really work, and it may take a year or so, but we would find a way for people who need it now to be able to afford the test.
Ryan Wrecker (17:05):
Yeah, it’s something that’s so new and fresh, it’s pretty amazing, some of the medical discoveries that have been made. And it’s so fast how some of these discoveries and testing could go. And just look at everything we went through with COVID, it’s amazing how the turnaround to get a vaccine out, something else. Dr. Russell Lebovitz, is the co-founder and CEO of Amprion. Thank you so much for coming on to KMOX.
Dr. Russell Lebovitz (17:29):
Oh, thank you so much for having me. And I really appreciate your questions.
Ryan Wrecker (17:34):
He joins us on the Bommarito Automotive Group Guest Line. Real fascinating. And I know that if you know someone that has been diagnosed or someone that’s going down that path, or you have a loved one or a parent or whatever it is, I mean, this is something that is extremely life-changing. So to find that there are developments in that field, it’s pretty exciting, very exciting. This is Overnight America KMOX.
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