Full Show Transcript
Spesker 1 (00:00):
Spesker 1 (02:14):
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Gwen Rich (02:28):
Hello there, and welcome to The Rich Solution on Mojo 50 Radio. I’m Gwen Rich, your host, your health advocate, and founder of The Rich Solution. So right here on Mojo 50 Radio, I talk about empowered health, what each one of you could do starting today to not only look but feel and live a healthier, happier disease free lifestyle. So today’s topic, we’re talking about a breakthrough test that can diagnose Parkinson’s decades before symptoms appear.
Gwen Rich (02:58):
So before I introduce my guest and we start talking about this important topic, I want to put the disclaimer out there, which I do on every show, and that’s about the information on this show is presented for educational purposes only. It is not intended as a substitute for the diagnosis, for the treatment or advice of a qualified licensed medical professional.
Gwen Rich (03:17):
The facts presented are offered as information only, not medical advice, and in no way should anyone infer that we are practicing medicine. So always seek the advice of a medical professional for proper application of this material for any specific situation. Again, today’s topic is Breakthrough Test Can Diagnose Parkinson’s Decades Before Symptoms Appear.
Gwen Rich (03:43):
So let me remind everybody about the sponsor of The Rich Solution Studio, and that’s NOoodle. Go to nooodle.com, N-O-O-O-D-L-E.com. Use #SPOONY, S-P-O-O-N-Y, all caps to get that 10% off. So right here at the tail end of April, April is Parkinson’s awareness, or I should say Parkinson’s disease Awareness Month. So we’re getting this in just in time. Very important. Did you know that approximately 60,000 Americans are diagnosed with Parkinson’s disease each year?
Gwen Rich (04:18):
Currently is estimated that there are more than 1 million people suffering from Parkinson’s in the US and 10 million globally. Incidents of Parkinson’s disease increases with age, but an estimated 4% of people with Parkinson’s disease are diagnosed before age 50. Parkinson’s is now the fastest-growing brain disease in the world. So what state has the highest rate of Parkinson’s?
Gwen Rich (04:47):
It looks like the prevalence of Parkinson’s, state by state, Vermont has the highest rate of Parkinson’s at 9.9 per 10,000. What about what country has the highest rate of Parkinson’s disease? So the number and health burden of Parkinson’s disease increased rapidly in China. It is estimated that China will have nearly half of the Parkinson’s disease population in the world in 2030.
Gwen Rich (05:15):
You may be aware, but neurological disorders are now the leading source of disability globally, and the fastest growing neurological disorder in the world is Parkinson’s disease. From 1990 to 2015, the number of people with Parkinson’s disease doubled to over 6 million. Driven principally by aging, this number is projected to double again to over 12 million by 2040.
Gwen Rich (05:43):
So additional factors, including increasing longevity, declining smoke rates, and increasing industrialization could raise the burden to over 17 million. So for most of human history, Parkinson’s has been a rare disorder. However, demography and byproducts of industrialization have now created a Parkinson pandemic that will require heightened activism, focused planning and novel approaches.
Gwen Rich (06:13):
So how likely is it that you or someone in your family will develop PD sometime in the next 10 to 20 or 30 years? Is there any way to know? Well, thanks to the work of a group of dedicated scientists, there is now a simple test that your doctor can perform to provide accurate, reliable detection for Parkinson’s disease, and LBD which is Lewy Body Dementia, even at the earliest stages.
Gwen Rich (06:42):
So years before physical symptoms of the disease start to appear. So who better than my guest today to talk on this subject, and probably provide us with many answers that you have on this important topic, including how likely it is that you or someone in your family will develop Parkinson’s disease sometime in the next 10, 20 or 30 years. So let me formally introduce you to Dr. Lebovitz.
So Dr. Russell Lebovitz, MD, PhD, is the co-founder and CEO of biotech diagnostics company, Amprion. So prior to his management career, Dr. Lebovitz worked on a senior site as a senior scientist and research physician for over 15 years. He also served on the faculty of Baylor College of Medicine in Houston and the Fox Chase Cancer Center in Philadelphia.
Gwen Rich (07:42):
Let me tell you a little about Amprion. You can go to amprionme.com. Amprion is a biotech company utilizing groundbreaking, early detection science to track the biomarkers, so this is AKA prions or misfolded proteins, that cause Parkinson’s disease, Alzheimer’s disease, Lewy Body Dementia, and other neurodegenerative diseases on the Parkinson’s-Alzheimer spectrum. So I believe he’s here. Welcome. Are you there Dr. Lebovitz? Oh, no. How do we not hear you? You came in loud and clear before. Hang on second. There we go.
Gwen Rich (08:26):
So I believe he’s here. Welcome. Are you there? Something changed. Wow. Hang on a second here.
Dr. Russell Lebovitz (08:37):
Gwen Rich (08:38):
There you go. Now you’re loud and clear. Sorry about that. Good morning.
Dr. Russell Lebovitz (08:42):
Good morning. How are you today?
Gwen Rich (08:43):
I am great. I’m so excited to have you on. You are going to enlighten me as well as our listeners on this really important topic. So you had a very short bio but impressive bio. I always like my listeners to get to know my guests. What can you fill in maybe with some gaps there that really talk about how passionate about what you do and why it is you do what you do every day?
Dr. Russell Lebovitz (09:09):
Sure. My whole life has been motivated by medical research, how we use and develop technologies to improve the lives of people. So my career was, early on, mostly in the cancer area where there were giant advances. In the second half of my career, I’ve been very interested in neurodegenerative diseases and believe that we can apply the same resources and ingenuity to attacking this new class of diseases that, as you say, are growing rapidly, demographically related and unlike cancer, where every month there’s something new, a new drug, a new device, a new diagnostic, we are very, very limited with what we have right now for neurodegenerative diseases, even though they are growing so rapidly.
Gwen Rich (10:04):
When you say that, are you referring to a cure?
Dr. Russell Lebovitz (10:08):
A cure, something that … These are diseases that probably, and we’ll talk about this in more detail, begin 20 years before we’re able to diagnose them and recognize them clinically. During that period, unlike the rest of the body, the brain doesn’t regenerate. So as we silently destroy different regions of the brain, it becomes irreversible.
Dr. Russell Lebovitz (10:33):
So it’s a very different problem and yes, so what we need are options, both in terms of proven lifestyle changes, drugs, devices, but today we’re going to talk about an early diagnosis and early detection, and how that could empower people to alter the course of the of their disease.
Gwen Rich (11:03):
I like that because empowered health is one of the pillars to my business because I think that’s how healthcare is going. It’s not patient-driven, or excuse me, it’s not doctor-driven. It’s patient-driven and it’s so important that we as patients are informed and be our best advocate, but I know it’s very difficult because there’s so much information out there. So I know we’re talking about neurodegenerative diseases. Parkinson’s disease is auto immune, is that correct?
Dr. Russell Lebovitz (11:33):
Gwen Rich (11:35):
Oh, it’s not.
Dr. Russell Lebovitz (11:35):
It’s okay. It’s multiple sclerosis. Much more-
Gwen Rich (11:37):
Oh, that’s true.
Dr. Russell Lebovitz (11:39):
What we’ll define is neurodegenerative diseases and it’s really interesting, you bring that up, because there’s so much overlap in symptoms early on between multiple sclerosis, which is a known autoimmune disease and we have treatments for autoimmune diseases, and Parkinson’s, which happens within brain cells. They die, they spread what is damaging the cells from cell to cell very slowly.
Dr. Russell Lebovitz (12:05):
So it’s a completely different mechanism than really anything we’ve ever dealt with before, and it’s really only in the last 20 to 30 years, we’ve had any idea what the causes are but even more recently, in the last few years, we’re really zeroing in and being able to measure markers that actually cause the disease.
Gwen Rich (12:26):
That’s huge. I know when I saw this, I was surprised because I wasn’t aware of a test for Parkinson’s disease. So neurodegenerative diseases are becoming more prevalent. Do you want to maybe enlighten us why or do you know why?
Dr. Russell Lebovitz (12:43):
Well, I think you gave a really great series of explanations. In part, these are diseases that take a long time to develop. So both Parkinson’s and Alzheimer’s, those are the two major and we’ll talk a little bit about neurodegenerative diseases. Some are cognitive, some are motor, some are in between and cross both lines, but as we age, because these are diseases that develop slowly over a large part of the second part of our lifetime, then, as our demographics change, you said, for example, China is where it’s growing the fastest.
Dr. Russell Lebovitz (13:24):
Well, they have not only the largest population, but one of the largest aging populations proportion of people over 60 and over 65. It’s really in that decade of the 60s where both of these diseases first appear most commonly, although you mentioned earlier that four to 5% of Parkinson’s appear at a relatively young age, and probably a higher percentage of dementias, Alzheimer’s and others appear at younger ages.
Dr. Russell Lebovitz (13:54):
You also mentioned that Parkinson’s is the fastest growing disease, and what that means is, it’s something beyond demographics, because all of these diseases are related to age, yet Parkinson’s recently is growing much more quickly. The reasons haven’t been fully understood. There certainly are experts and researchers in the field who believe that some of this may be due to our increased exposure to certain solvents, cleaning solvents, other things, but none of this has been narrowed down and proven, but it’s probably a combination, as you say, of things related to industrialization, and probably environment as well as demographics. If we just stuck with those two, it probably explains 80 to 90%.
Gwen Rich (14:44):
That’s really good to hear. So let me ask you too. So what, if any, does genetics play a part or role in someone getting Parkinson’s disease?
Dr. Russell Lebovitz (14:56):
So in Parkinson’s disease, you definitely see familial clusters and with the very powerful genetic tools we have now, we’re able to look at people who have Parkinson’s in their families and compare them to people who don’t. There are a large number of genes, each of which plays a very small role in general. So what we would say, because of that, is that genetics probably plays no more than 10% of a role and that’s in families with clusters.
Dr. Russell Lebovitz (15:32):
So yes, genetics can play a role, but 85 to 90% of people who get the disease have no particular strong genetic link. So this is a disease that can happen to any of us. Again, it probably happens in our late 30s, 40s, early 50s, but it can happen to anyone, and we can talk about some of the known correlations with a disease, but it’s largely unknown how it’s triggered.
Dr. Russell Lebovitz (16:00):
What we understand now is once triggered, what kills the cells and why it grows from a very small event that happens once to wiping out whole regions of our brain over 20 or 30 years.
Gwen Rich (16:15):
So to me when I hear this, and hopefully listeners feel the same way, is that since genetics plays a small role in it, I would think the field of epigenetics plays a huge role, and that is your lifestyle choices has even more factor into determining whether it develops or not. Would you agree?
Dr. Russell Lebovitz (16:40):
Yeah, and if we call epigenetics, everything outside of what we’re born with, largely environmental. Some people would call epigenetics, things that just happen in ourselves that may be even internal and not environmental, but let’s call everything we’re not born with epigenetic, and that probably is the major factor in all of the neurodegenerative diseases.
Gwen Rich (17:04):
Great. So you said … Wait, let me go back. At the very beginning, you talked about developing a test, and how this is great, because we can empower people to then make a decision of what they want to do to hopefully diminish their risks, or help them if they do get the diagnosis of Parkinson’s disease, because it’s my understanding, those what? Four to 5% who develop it early, this is something, a test that could really help them as far as diminish maybe the rate at which it develops.
Dr. Russell Lebovitz (17:43):
Well, let’s talk about information and what one does with information and how information empowers people. So what we like to say, with respect to early diagnosis, is early detection empowers early prevention. So you’ve raised the case of the four to 5% who get that early. We can certainly help confirm that diagnosis, but those who get it early, what we’re talking about there is they have the full-blown symptoms.
Dr. Russell Lebovitz (18:13):
So clinical diagnosis for people who have full-blown symptoms is pretty accurate. Parkinson’s symptoms, as we said, can overlap with other diseases. So on a practical level, probably 20% on average, are misdiagnosed. That’s no fault of any doctor. It’s just that without a definitive molecular test for the disease, the best guess is about 20% off. So people have early disease, a test can help but they already have the symptoms. Ultimately, where an early test helps is people who get signs that are a precursor, or they have a family history, but they actually have no symptoms that it could be diagnosed as a disease.
Dr. Russell Lebovitz (19:02):
At that point, someone may be 20 or 30 years away from a debilitating disease if they don’t do something. So going back to our early detection empowers early prevention, let’s just say that someone at 50 years old has some reason to believe that they might have it and they decide with their doctor to get tested and it turns out that they have what we measure.
Dr. Russell Lebovitz (19:28):
Well, what we measure and we’ll talk about it in a little bit is what carries the disease. So if you have what we measure, you have a time bomb ticking, and slowly it is progressive. Right now there’s nothing to stop it and over 20 to 30 years it will lead to symptoms. So you can say, “Well, there’s no cure. Why have information? But I would argue again, back to early detection, empowers early prevention, there are things that one can do.
Dr. Russell Lebovitz (19:58):
First and foremost, there are plenty of studies showing that lifestyle in terms of diet, in terms of exercise, in terms of avoiding certain damaging agents like smoking can definitely slow down the disease. These are very credible research studies. So knowing that, even without a drug or a device, the earlier one knows, the more one can slow it down.
Dr. Russell Lebovitz (20:25):
If you think about, perhaps with lifestyle, maybe we can only slow it down 25 or 30%. Well, if you start that early, then that 25 or 30%, because this is a disease that grows over time exponentially, you might delay the onset of symptoms and the debilitating side of the disease by 20 or 30 years. That might be enough. If you started late, when things are already destroyed, the benefit of some sort of a lifestyle change or slowing the disease is much less.
Dr. Russell Lebovitz (20:59):
So one, you’re empowered by having an early knowledge that allows one to slow it down. Second is, it is a personal choice, but if someone at age 45 or 50, knows they have a disease that might make it difficult 20 years later to travel, to do things that give them full independence, they might decide to change their life in a way to take more time off, and to travel more, whatever is on their bucket list so that when they are debilitated later, then they can say that, “Look, I knew this, I got these things off my list. My regrets are less.”
Dr. Russell Lebovitz (21:39):
Maybe most importantly, is if one knows that they have a disease and there are many people searching for cures and there are more than 500 clinical trials involving drugs, devices, lifestyles, one who has this information early might decide to enroll in one of those trials that most aligns with their philosophy and their preferences.
Dr. Russell Lebovitz (22:08):
So that’s a double edged sword in a positive sense that one, you may hit on the one in a clinical trial that actually helps you, but you’re able to contribute to other people. By having this early knowledge, the way we develop things that work is by people who step forward and participate in research studies that are sanctioned by FDA and are safe, and in many cases, this leads to cures or improvement. So those are just three or four ways in which we believe early detection very strongly empowers early prevention.
Gwen Rich (22:43):
Absolutely. Let’s do this. I’m going to give you a break for a minute so I can talk about our sponsor of The Rich Solution Studio. When we come back, two questions that I would like you to answer. One is, you talked a little bit about those who have the diagnosis will have certain symptoms. Then you talked about people who may go undiagnosed. I want to know if they have different symptoms, so that maybe those who are listening can say, “Hey, okay, I have a family member who’s starting to exhibit this or maybe I’m starting to exhibit this.”
Gwen Rich (23:16):
So I want you to speak on that. The other is you mentioned that did cancer research, which I’m actually very interested in as well. Probably don’t know my story, dealing with stage four metastatic breast cancer. So always interested to have … You probably come back and talk about the cancer aspect, but you mentioned there’s at least 500 clinical studies going on with Parkinson’s disease. I want you to tell me how that compares to the clinical … How many clinical studies are going on with cancer. So I’ll give you a minute to just take a breath.
Gwen Rich (23:50):
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Gwen Rich (24:18):
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Gwen Rich (24:38):
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Gwen Rich (25:00):
So check it out. It’s gluten free, dairy free, soy free, fat free and if you’re on Weight Watchers, it’s only one serving. So that’s nooodle.com. Use #SPOONY, all caps to get that 10% off. Ok so we have Dr. Lebovitz on today, talking about a great breakthrough with a test for Parkinson’s disease, which really excites me because we need more proactive things that people can look forward to, I believe in prevention.
Gwen Rich (25:32):
So right before the break, I asked you a couple questions. I don’t really care what order you want to address them. That’s up to you. Hopefully, I was clear on my questions.
Dr. Russell Lebovitz (25:45):
You asked a lot of questions. So I’ll start with the parts that I remember and you can egg me on and push and we’ll get through all of them. So, you asked me maybe to compare some of my experiences earlier with development of cancer on knowledge, diagnoses, treatments, and where we are comparing that to where we are at neurodegenerative diseases today. Again, the disclaimer here is that my knowledge of cancer was very broad and deep several years ago, maybe 10 years ago.
Dr. Russell Lebovitz (26:25):
So there are people far more qualified, but I was certainly working at the early stages. The main breakthroughs in cancer came, in my opinion, beginning in the mid-70s with our ability to manipulate and diagnose DNA and RNA, and to look for changes that occur rarely in just a few cells. What we came to understand is, cancer is a disease of what we’ll call somatic mutations.
Everything’s normal, you’re born with certain DNA and genes but there’s a background of mutations. Certain mutations then cause individual cells to grow out of control and once that happens, the extent to which it grows and spreads and metastasizes is the disease itself.
Dr. Russell Lebovitz (27:17):
What we have learned is that we understand that those mutations cluster into certain pathways, and we’ve developed drugs to treat some of those pathways. One of the differences is that even in advanced stage cancer, it mainly affects … You have cells that grow and if you can destroy those cancer cells, the underlying damage to tissues, most of those tissues can regenerate.
Dr. Russell Lebovitz (27:45):
So even late, we always have the hope of a drug that if you can hit a cancer cell specifically and some of the latest breakthroughs with immunotherapy work in terms of people who have advanced disease who couldn’t have been treated before. So because of that, and because of this broad and deep knowledge, we have very specific tests, all of which are similar.
Dr. Russell Lebovitz (28:09):
They all use sequencing of DNA and we’re now about to have a revolution there that you can look in someone’s blood, and you will see DNA changes that indicate that a cancer is likely to be present, and we know what to do. So every month, there are new advances, both diagnostically and therapeutically. Let’s contrast that with neurodegenerative diseases.
Gwen Rich (28:33):
Dr. Russell Lebovitz (28:35):
Our breakthrough in neurodegenerative diseases is much more recent, and we’re coming to understand it’s a very different class of diseases. So it’s not caused by somatic mutations, first of all. It’s largely caused by a mechanism that no one had thought about much that was discovered, really, in the 1980s, largely around mad cow disease, where we discovered that suddenly there was a disease that affected the brain.
Dr. Russell Lebovitz (29:08):
It would destroy memory, it would destroy movement. In the case of mad cow disease, it was actually transmissible in eating meat from infected cows but we understood, we came to understand and there were at least two Nobel Prizes given for this work. What we came to understand is that this is a disease not of DNA, but of proteins that after they’re already made, a very small class of proteins, largely in the brain have a unique property that wasn’t suspected before, and that they behave for … The picture I’ll paint for you is just like Transformers in the movie, or the television show.
Dr. Russell Lebovitz (29:51):
These are proteins that unchanged, can flip into two different shapes that look different and have different function and for all of these proteins, they have what we’ll call the good form. If we want to use a Star Wars analogy, a Luke Skywalker form that really helps us. Something happens and those specific few proteins can flip and transform into what we call a prion form and in the prion form, it’s a Darth Vader form.
Dr. Russell Lebovitz (30:23):
What is dangerous in cells that have this Darth Vader form is one, the transformed prion form damages and kills cells irreversibly, but more dangerously, what it does is this transformed prion-like form converts the normal form, the Luke Skywalker form for all intents and purposes into Darth Vader. So this is how it spreads.
Dr. Russell Lebovitz (30:49):
So as it spreads, it may start in one cell or a handful of cells, but it spreads and it converts the normal protein into the damaging protein. So the damage and the loss of cells spreads through the brain. So what are the analogies between cancer and neurodegenerative disease? Well, they have very different mechanisms, but both start as a rare event, and they have some way to spread.
Dr. Russell Lebovitz (31:15):
In cancer, it’s the cell itself that takes on the property to be unregulated. In the case of neurodegenerative diseases, it’s really these prion-like transformed proteins that spread. They’re more like a virus, like a COVID. Only, they’re not infectious as far as we can tell between people, but they infect adjacent cells. So knowing this, the problem and the difference for neurodegenerative disease compared with cancer, because that was your question, and it’s a very insightful question and I hope that the answer is making sense and is clear that while when cancer destroys tissues, it’s very devastating.
Dr. Russell Lebovitz (31:57):
If we can’t control the cancer, the tissues can get destroyed, and we get destroyed. In the brain, once these prion-like transformed proteins destroy brain cells, the brain doesn’t have the capacity. So even if we stop it dead in its tracks, late in disease, we never recover those cells. It’s those cells and their connections that are our memories, our ability to connect things. On the other hand, the hope here is the brain is what we call plastic.
Dr. Russell Lebovitz (32:28):
So at all stages of life, it makes up for the fact that it can’t regenerate cells by finding new ways to make connections. The best knowledge we have there is in people who have had strokes, who can’t speak and relearn to speak. So there’s hope even at a late stage, but the best hope is at an early stage to stop or slow the progression of the disease.
Dr. Russell Lebovitz (32:52):
So that was long winded and you may want to come back and ask questions, but I really appreciate your asking this because I think for your listeners, it’s important to understand context. Again, this is my view of it. This is … I’m not claiming to be the world’s expert in meaning to pontificate, but I do think that there are insights from knowing about both classes of diseases that may be helpful to people.
Gwen Rich (33:20):
Absolutely, because to put it in context is very important. You did a great job because cancer is so prevalent. Breast cancer alone, it’s one out of every eight women over their lifetime is going to get it. men, it’s one out of nine. So now we’re talking about neurodegenerative diseases, which we’re seeing an increase in. As the stats showed at the beginning of the show, Parkinson’s disease is on the rise.
Gwen Rich (33:45):
So these two are very important. I think, probably two of the biggest things people are going to have to be concerned of and I’m lumping Parkinson’s disease with neurodegenerative and Alzheimer’s, because I believe the stats, if I’m correct, is if we’re so lucky to live to be 85, one out of every two people are going to have Alzheimer’s.
Gwen Rich (34:05):
So I don’t know how that compares … Well, we did a little bit of the stats with Parkinson’s. So I’m hopeful with what you have to say here is there’s still so many things that people can do early on in life that hopefully can reduce the risks of either one.
Dr. Russell Lebovitz (34:21):
Yes, I think that what you’re doing that is so valuable here, and I hope I’m helping is getting out the message that these are things that as you say, as we get older, we will all face and the more knowledge we have, and the earlier the knowledge we have, the more we can do to be proactive and preventive and take, to a certain extent, our fate into our hands. You also asked in the last question, which I didn’t answer because it was a long-
Gwen Rich (34:55):
Dr. Russell Lebovitz (34:56):
But you asked about there are certain signs even at the earliest stages, things that are somewhat unusual, but also overlap a lot with normal signs and I can discuss a few of those that are indicative that someone is maybe developing Parkinson’s. Sometimes when I describe the symptoms, it’s the details of the symptom that leads one to believe that they might have a problem.
Dr. Russell Lebovitz (35:28):
With this information about these symptoms, if someone has one or more of these symptoms and they come and don’t go, and they stick around for a while or get worse, it may be an early sign to see a doctor. That’s really what drives early detection. Someone has to have a reasonable suspicion, and their doctor has to confirm it.
Dr. Russell Lebovitz (35:52):
So let me go through some of the signs and you’ll see that none of these by themselves is magical, because this isn’t the disease but these are changes that one would notice. Your whole life, you know who you are, and suddenly things about you change and they happen suddenly. So the first, we would say is trouble sleeping or a sleeping disorder. That includes almost everyone.
Dr. Russell Lebovitz (36:17):
However, the details here that the problem in people who ultimately develop Parkinson’s is a very specific sleep disorder where they find themselves waking up, but literally thrashing and moving in the middle of the night, particularly in deep sleep. Sometimes they may be acting out physically things in their dreams.
Dr. Russell Lebovitz (36:40):
This is reported most actually by people who have partners, and the partner reports that you’re hitting me in the face, what’s going on, and it’s every night. So this sort of a sleep disorder is not so common, and it is linked to Parkinson’s and to other neurodegenerative diseases. It may be that parts of the brain that separate our thoughts about moving from our actual movements may be damaged.
Dr. Russell Lebovitz (37:09):
It’s not completely clear why but there’s a really interesting sign. Next, is sort of stiffness is what we’ll call it but everyone who is proactive, probably goes to the gym or pushes themselves harder than usual sometimes, and you find that you’re sore or stiff. This is a little different. This is that you learn … Your whole life, you know how to walk. You know if you’re an athlete, you know the motions of playing golf or playing tennis.
Dr. Russell Lebovitz (37:40):
One day, you find that the things you did so well, suddenly, some parts of those movements are just hard that you can’t get through them. It’s different than I pulled a muscle yesterday. It’s just things don’t move the way they used to. With people with Parkinson’s, it has different manifestations. One that’s really interesting is that people may find that as these changes occur, their handwriting changes.
Dr. Russell Lebovitz (38:09):
So you have a signature, we used to use that before digital signatures, that’s who you were. Well, suddenly, your handwriting and your signature shrinks to a third or a fourth of the size and that’s all you can do. That’s because something as easy as writing your signature, that’s just part of your brain, it changes. You can’t move as easily. So the theme here is going to be things you could do before, you find have changed, but you’re able to mostly function, you just notice changes.
Dr. Russell Lebovitz (38:41):
A third, that isn’t surprising, we’ll call it voice changes. So again, it’s think of someone like you, Gwen. You are very facile in speaking. It happens also a lot with actors and singers where suddenly someone would find that what they do every day, their brain’s moving and their mouth and their throat and their vocal cords aren’t moving in sync anymore.
Dr. Russell Lebovitz (39:07):
So very often, it happens with actors and singers because they know their voice and the first sign is often that I can’t control my voice the way I could and my voice is my instrument. I know it very well. So, again, it’s not that your voice changes in its tone. It changes in its tone, but it’s because of a noticeable subtle lack of control. Postural changes.
Dr. Russell Lebovitz (39:35):
Again, people as they get older, some can get scoliosis, all sorts of things happen, but here it’s again sudden, and it’s more due to inability just to keep both sides balanced. We take that for granted and with postural changes, if you’re leaning to one side, you also can find balance changes. It’s hard to compensate that you’re suddenly leaning to one side and either falling or stumbling.
Dr. Russell Lebovitz (40:02):
Next is a common symptom, but it’s common with Parkinson’s as well, fatigue. Here, the fatigue may be all types. It may be related as much to the other things I’ve discussed, that suddenly it’s hard to move. So there’s a general sense of fatigue associated that it’s just tough to get through everyday life.
Dr. Russell Lebovitz (40:27):
Next to the last one I want to discuss used to be … I would have said that until January, of 2020, this was maybe the best sign and that is a sudden unexplained loss of smell and taste. When this happened, it would be pretty much permanent. So, again, you’re fine and one day you can’t taste things that you tasted and you can’t smell things. So we call the loss of, or a reduction of the sense of smell hyposmia and we call the absolute loss, anosmia, that there’s no sense of smell, and that’s linked to taste. Beginning in January, of 2020, this turns out to be a major symptom of COVID-19.
Dr. Russell Lebovitz (41:16):
So hopefully as we get back to normal and we become a healthy population, again, this sign will be restricted more to people with neurodegenerative diseases, but it would be very hard, but before COVID, this was a really great sign. Then the last one is something that everyone has throughout their lives but there’s a subtle difference here. So a sudden onset of constipation, but in this case, it’s because just like we’re discussing the way that you can’t move your muscles in your arms and legs and trunk or control them, here the muscles in your gut are no longer coordinated.
Dr. Russell Lebovitz (41:58):
They don’t move as well. So it’s a sudden onset, but it’s not one that’s relieved by any of the many, many over the counter or prescription therapies. It tends to stay and it tends to get worse. So after a while, one might begin to consider something like Parkinson’s. Then if you have one or more of what I’ve discussed, then that’s really a trigger. So let me stop there for a second and see if that resonated at all.
Gwen Rich (42:33):
Oh, it did. That was awesome because I think people can listen to that and they may have a family member who are exhibiting some of these things or I think the one with your partner. You sleep with somebody for how many years and the thrashing, and that is a big telltale. So very helpful. My question to you is before your test that you guys developed and I’m thinking more like auto-immune, because I’m familiar with that. You have to exhibit so many symptoms before it’s considered the diagnosis. Does that hold true for Parkinson’s disease?
Dr. Russell Lebovitz (43:10):
Absolutely. So these signs in the absence of a definitive molecular test, maybe 10 or 15 years before one starts to develop what is considered Parkinson’s symptoms where, what we’re talking about here a little bit of stiffness. So what I said was you’re still playing tennis, you’re still swimming, you’re still playing golf.
Dr. Russell Lebovitz (43:34):
You notice you’re not as skilled. To get a diagnosis of the disease, it tends to be much more advanced. So if we’re 10 years ahead here, even when someone begins to show up with definitive symptoms 10 years later, even then it’s very difficult. The way diagnosis has been made in the past is largely, let’s just keep watching.
Dr. Russell Lebovitz (43:59):
Let’s just keep testing and if it doesn’t get better and it keeps getting worse at a certain point, we’re going to call it Parkinson’s. So for patients, this may be a 15 or 20 year journey for those that had early signs, but it’s almost always a two to five year journey for those that didn’t have early symptoms.
Dr. Russell Lebovitz (44:25):
It’s a source of great anxiety. It’s impossible … The best that the world’s most skilled physician can do is say, “I’ve seen a lot like this. We can give you some drugs to see if you get better or at least improve,” but these are very difficult decisions. There are some well characterized stories of how hard this is. One is, and I’m not sharing anything firsthand, but just reading, just like you would, story of Linda Ronstadt, the singer who found that I believe around 2000, what I described before, voice changes and she no longer, this is her story, could control her voice.
Dr. Russell Lebovitz (45:08):
So she noticed that and after several years, was given a diagnosis of Parkinson’s. Over time, literally between, and I believe, I’m paraphrasing. I may not have the dates right, but let’s say between 2005 and 2016, that was the diagnosis but it progressed in a way that by 2016 or ’17, the same doctor said, this doesn’t look like Parkinson’s. It’s another neurodegenerative disease.
Dr. Russell Lebovitz (45:39):
So she’s come out in the last few years to say that it’s something, I believe called progressive supranuclear palsy. Although, I’m not an expert on her case, but I think it’s a really instructive one and there are many people like this. This just happens to be one in a famous person who was willing to share. So this is someone who will get the best care possible, the best doctors, and even then, it’s very difficult. So, these are challenges and what we can do at Amprion is to determine early if the molecular change, and we talked about these transformed proteins, these prions.
Dr. Russell Lebovitz (46:21):
For Parkinson’s, what we didn’t say, there’s a very specific protein that misfolds. It’s called alpha-synuclein and that’s really the first product, the first test that Amprion has introduced and that’s what’s in the market now. Synuclein is a very important protein, but when it misfolds, it’s a very dangerous protein. It leads to Parkinson’s and it also leads to a disease called Lewy Body Dementia, which is devastating.
Dr. Russell Lebovitz (46:51):
It’s the disease that Robin Williams died of and what’s so unique about Lewy body Dementia, it is almost divided half between all of the signs of Alzheimer’s and all of the signs of Parkinson’s.
Gwen Rich (47:06):
Oh my gosh. Because as far as I remember, I thought he was diagnosed with Parkinson’s. It’s not like I follow the news with celebrities in that type of thing, but that’s what I remember.
Dr. Russell Lebovitz (47:19):
That is common. That was the original and then Lewy Body Dementia, it looks like Parkinson’s and it looks like Alzheimer’s, and it’s devastating because it tends to progress faster than either Alzheimer’s or Parkinson’s. One thing to say here is that what people say about these diseases tells you something about them.
Dr. Russell Lebovitz (47:41):
People tend, unfortunately to die of Alzheimer’s and ultimately of Lewy Body Dementia. People tend to die with Parkinson’s. So Parkinson’s is debilitating. It leads to needing care, but it rarely, or only after many years destroys the brain so widely that it’s fatal. So people tend to have Parkinson’s for a very long time and that’s why in your introduction, 60,000 people a year, but as many as a million and a half, certainly more than a million with the disease.
Dr. Russell Lebovitz (48:17):
That says that on average, even after diagnosis, people can live 20 years easily. Even though it’s progressive and they’re progressively unable to move and be independent.
Gwen Rich (48:30):
Oh my gosh. So let’s do this. Let me take a minute here to talk about what The Rich Solution is doing to help everybody during this pandemic. When we come back, I do want you to talk more about this test, who it’s designed for, what kind of a doctor, maybe if people need to see specifically, any insight for people who hear this and they want to go see a doctor and go further with this.
Gwen Rich (48:55):
So, let’s talk about The Rich Solution. Go to the richsolution.com. So those who are avid listeners know that in 2020 with the pandemic, we were doing our part to try to help people because we know everybody was really stressed out. If you’re new to The Rich Solution, you can go check on my website and see what my philosophy is with supplements.
Gwen Rich (49:16):
I do believe in them, I use Life Extension. I’ve been using them for almost 15 years. I believe everybody has some type of a nutritional deficiency, but it’s not a one size fits all. So we’ve put together kits in hopes of helping people. It’s a way to get started. So you don’t need a code. 2020, it was just about purchasing a kit and we threw in a two months supply, $60 value of our Rich-Adapt, which is an adaptogen. It’s all natural.
Gwen Rich (49:46):
It comes from a plant or tree. Helps reduce stress. So this year in 2021, we are upping the ante with that and we’re also throwing in the Rich-Veratrol, which is resveratrol and antioxidant. Two months supply, $60 value. So just by going to therichsolution.com, purchasing a kit, we’re going to throw in those two complimentary supplements.
Gwen Rich (50:07):
So it’s something you’re going to get an email, we’ll let you know when you’ll be receiving those two complimentary supplements. It’s two months supply for each one, $120 value. So enjoy this while supplies last. Go to therichsolution.com. You can click on supplements or Life Extension. If you certainly have any issues or any questions, you want help, you don’t know where to get started, you can always email me, email@example.com. So check it out therichsolution.com.
Gwen Rich (50:38):
Alright, so we’ve got Dr. Lebovitz here talking about Parkinson’s disease and neurodegenerative disease, which is a really important topic seeing that it is on the rise, and I think everybody does need to get their head out of the clouds and really start being … I know it’s free will, but I believe in prevention. Really want to hear about this test, what you can let people know about it, where do they get it? How do they ask for it? Do they need to go to a specific doctor?
Gwen Rich (51:07):
Because when I hear this, you’ve got such great information and then I’m just like, anyone else, after this episode, “Well, what do I do next? What are some next steps?” So why don’t you first talk about this test, who it’s designed for and next steps.
Dr. Russell Lebovitz (51:24):
Sure, and thanks for that introduction and the opportunity to discuss this. So our test which we refer to as SYNTap and we’ll talk about that in a second is a test for specifically this misfolded, transformed prion form of the protein alpha-synuclein. This is not only a marker in that it’s associated with Parkinson’s and Lewy Body Dementia, but it seems to be the driver.
Dr. Russell Lebovitz (51:53):
So for us, and I think for the scientific community that follows this, being able to detect misfolded synuclein is like being able to detect COVID. It tells you that you have a process ongoing, and that, unfortunately, in this case, we don’t have an easy cure. Well, same as for COVID actually. It’s just a very different type of disease, but we are looking at the signature of the disease. So we and others have done a lot of research studies doing this test.
Dr. Russell Lebovitz (52:26):
In those research studies, it’s very clear that patients who are known to have Parkinson’s and let’s just use the clinical criteria. The way we would diagnose someone with Parkinson’s, the absolute way we know is unfortunately the same as Alzheimer’s. That’s after they die, and at autopsy, and you look in their brain and with patients with Parkinson’s, you see that a specific region of the midbrain is gone.
Dr. Russell Lebovitz (52:54):
The cells are mostly destroyed and in their place, there is something you see under the microscope called Lewy bodies and Lewy bodies are fragments of a pathological process in the cell, largely made up of misfolded synuclein. So if you have Lewy bodies in the brain at autopsy, that’s a very good mark that you’ve had Parkinson’s. So one, there are research studies that look at people where our test was performed many years before they eventually died and Lewy bodies were shown to be present in their brain.
Dr. Russell Lebovitz (53:36):
The upshot of it is that it correlates very well. The test, 10, as many as 20 years before so far on a research basis, shows that the test could have predicted who would have had Lewy bodies, who had Parkinson’s. So it correlates so well that I think it’s fair to say that at least what we call Parkinson’s needs to have Lewy bodies and misfolded synuclein and if it has it, we can detect it and we can detect it in this test.
Dr. Russell Lebovitz (54:07):
Certainly in all of the research studies, people who are 10 or 20 years before they develop symptoms of Parkinson’s turn out to be positive in this test. In general, people who turn out not to have progressive Parkinson’s, but have something that looks like Parkinson’s tend to be negative. So it is a really strong correlation.
Dr. Russell Lebovitz (54:31):
So who is it for? Well, one it’s for people who, where they and their physician believe that there is a significant chance that they have this progressive disease. They have a sign. They either have a family history, or one of the signs I’ve mentioned earlier, and they believe that having this information can help both the doctor and the patient either by empowering them for preventive care, or getting them in a clinical trial. That’s who it’s for.
Dr. Russell Lebovitz (55:04):
It’s for people who believe that they at any stage have Parkinson’s or Lewy Body Dementia and since both of these are life-changing events, in terms of the diagnosis, people who are diagnosed with Parkinson’s go on to work a fairly shorter number of years in general. So it requires planning to have this diagnosis, and it’s so important that you not be 20% wrong or 25% wrong since it’s changing.
Dr. Russell Lebovitz (55:36):
Now the test itself measures misfolded synuclein in a sea of normal synuclein, and the reason that’s important is these are exactly the same protein as far as we can tell. It’s just folded into a different shape. So all of the tools that we have developed as a medical and scientific community over the past 50 years for looking at proteins, these two are mostly identical.
Dr. Russell Lebovitz (56:03):
So it really is Amprion’s technology that looks specifically at the misfolded form, at the prion-like form and can detect very, very, very small amounts in a sea of a normal protein that for all intents and purposes looks the same to every other tool. So the one thing here that is important to emphasize, that this isn’t a test that everyone should get, unless they have good reason. One, it must be through a doctor. The other is that right now, really the strong accuracy here really measures what’s going on in the brain and our best window into the brain is to have a drop of spinal fluid.
Dr. Russell Lebovitz (56:47):
Now, that’s not a such a difficult thing to obtain from a skilled doctor. Generally a neurologist, putting a small needle for a few minutes into your lower back, really it causes no damage, but it’s something that women who get an epidural during pregnancy have all the time. So this is something that there’s a great deal of skill, but it’s something that people don’t think about routinely, but it’s measuring what’s going on in the brain.
Dr. Russell Lebovitz (57:18):
It’s the ability to see what’s going on in the brain that allows us to look 10 or 15 or 20 years earlier. We’re also working on developing a similar test in blood, but it’s just so far not nearly as sensitive because you’re so much farther away from the brain. So right now, this is something that it’s a serious test in the sense that you need a neurologist. Ultimately, it may be that this is something that your primary care physician orders before you go to your first neurologist appointment because as I said, even in the hands of a very skilled neurologist who knows about this disease, it could take 18 months or more and cost tens of thousands of dollars for a diagnosis. So we can shortcut a lot of that.
Gwen Rich (58:09):
Yes. I’m sorry, I had to do that with the intro. We’ve got to go.
Dr. Russell Lebovitz (58:13):
Gwen Rich (58:14):
Thanks everybody. Have a great weekend.