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Parkinson’s disease (PD) is a neurodegenerative disorder that is rapidly overtaking Alzheimer’s disease as the most common.
It’s a progressive disorder of the nervous system that affects movement and can lead to tremors, slowness of movement, stiffness in the limbs and trunk, balance problems, and difficulty walking. There is no cure for this disease but there are many ways to manage it.
PD has many problems for our society, from caregiver stress to hospitalization costs, but our understanding of genetic and environmental causes is slowly upgrading them to the level of diseases – ‘a much-needed step towards precision medicine.’
Precision medicine offers the hope of tailored treatments for each individual, rather than a one-size-fits-all approach. We hope that by increasing our understanding of PD we can create better treatments and hopefully one day a cure.
Join me in conversation with Dr. Alfonso Fasano, Professor of Medicine, Neurology University of Toronto.
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Bio:
Dr. Alfonso Fasano is a renowned and award-winning neurologist, scientist, and researcher. He has published over 180 papers in peer-reviewed international journals, including the prestigious New England Journal of Medicine. He joined Toronto Western Hospital’s Movement Disorder Centre where he co-directs the surgical program for movement disorders. Dr. Fasano’s main interest is patho_physiology, studying how problems with brain function can lead to changes in behavior or other symptoms – which he pursues through his research on Parkinson’s disease (PD). He is currently leading several clinical trials to better understand PD and improve treatments.
Learn more about Dr. Fasano:
Deep Brain Stimulation (DBS) Clinic: https://www.uhn.ca/Krembil/Clinics/Deep_Brain_Stimulation_Clinic
LinkedIn: https://www.linkedin.com/in/alfonso-fasano-5437b42b/
Transcript:
Hanh:
Hi, I’m Hanh Brown, the host of the Boomer Living Broadcast. And on the show industry leaders share inspiration, information, and advice for those who care for seniors. Our expert panelists discuss senior health care, dementia, care giving technology for seniors, and affordable senior living options, all of which address the social determinants of health. So, thank you so much for participating in the conversation. So check out the CareString.com, our recently launched platform where we match seniors with caregivers to guide businesses and their employees through the care giving journey for the loved ones. So, please check out CareString.com. Now, for those in the audience, we love to hear from you. So, please comment below if you have any questions and we’re very glad that you’re here. So, today’s topic is Parkinson’s disease. Is it a paradigm of aging? Parkinson’s disease is a neurodegenerative disorder that is rapidly overtaking. Alzheimer’s disease as the most common. It’s a progressive disorder of the nervous system that affects movement and can lead to tremors, slowness of movement, stiffness in the limbs and trunk, balance problems, and difficulties walking. There is no cure for this disease, but there are many ways to manage it. Parkinson’s disease has many problems for our society from caregiver stress to hospitalization costs, but our understanding of genetics and environmental causes is slowly upgrading them to the level of diseases, a much needed step towards precision medicine. Precision medicine offers the hope of tailored treatments for each individual rather than a one size fits all approach. We hope that by increasing our understanding of Parkinson’s disease, we can create better treatments and hopefully one day a cure. So joining me today in conversation is Doctor Alfonzo Fasano, Professor of medicine, neurology, University of Toronto. Dr. Alfonzo is a renowned and award-winning neurologist, scientist, and a researcher. He’s published over 180 papers in peer reviewed international journals, including the prestigious New England Journal of Medicine. He joined Toronto Western Hospital’s Movement Disorder Center, where he co-directs the surgical program for movement disorders. Dr. Fasano’s main interest is pathophysiology, studying how problems with brain function can lead to changes in behavior or other symptoms, which he pursues through his research on Parkinson’s disease. He’s currently leading several clinical trials to better understand Parkinson’s disease and improve treatments. So, Dr. Alfonso welcome to the show.
Alfonso:
Can you hear me all right?
Hanh:
Yeah.
Alfonso:
Okay. Well, that’s a great honor for me to be on your show, on this program. And, I think what you’re doing is really useful to patients and importantly family and the public opinion in general, because clearly there is a need to understand what we’re talking about. The general knowledge of this conditions need to be improved, otherwise, we are all at the mercy of what’s happening on the internet and the wrong information that very often are out there that are just misleading patients and families. So, thanks for what you’re doing and thanks for inviting me.
Hanh:
Thank you. Thank you so much for being here. And of course Parkinson’s and Alzheimer’s happen in the later part of life, but we also know that it can happen early in life. So, the title may be a little misleading, but it can happen in all ranges of life, right? And since our scope is for the seniors, I think it’s important that we learn, we educate and put the information in the forefront and do what we can to hopefully defer it or prevent it. So, thank you. Thank you for your work.
Alfonso:
Thank you, Hanh.
Hanh:
So, I guess, to bring everybody in the same page, what is Parkinson’s and what is your perspective on the future of Parkinson’s?
Alfonso:
Yeah. So, actually you beautifully summarized what Parkinson’s is and the future in the introduction of the podcast. We should start by saying that even though we call it Parkinson’s disease, we should call it Parkinson’s diseases. It’s a plural or even better Parkinson’s syndrome. Parkinson’s is the first doctor from London where at some point a couple of centuries ago, recognized that a few patients had, actually five patients. He described five patients, had certain features, he called it shake, shaking palsy which is a little bit of a interesting combination of words because shaking means movement excessive moments, but at the same time palsy, lack of movement. And actually he captured what this disease is. It’s the combination of involuntary movements. And we can talk more about it. And more importantly, what doctors called bradikenesia, which means slowness of movement, as you said. And actually, it’s bradykinesia, what really affects people’s quality of life because tremor may be embarrassing. But it’s not the major problem. The major problem here is that people can’t move well. So, this is in a nutshell, the description of what the disease is. And obviously there’s a lot of emphasis on the motor feature of this condition, as you mentioned already in the introduction, but it’s now recognized that Parkinson’s disease includes a variety of known motor problems. And actually these motor problems are more often the major driver of a poor quality of life. So, if you have time, we can talk more about it. So, going back to what I was saying before, it is a syndrome. A syndrome indicates in medicine, a number of signs and symptoms, and that can be caused by a variety of reasons. That’s why we need to acknowledge right from the beginning of this podcast, that this is a very heterogeneous condition. Yeah, we can use the term condition. We can use the term diseases. We can use the term syndrome. But it’s well recognized now that Parkinson’s disease is not a single thing. And it took a while to get there. And this explains why so far, we don’t have a cure. I’m sure we’ll talk more about it during this same conversation. But you asked me about the future of this condition, right from the start. And I’m telling you that the future, we’ll start with recognizing at each individual level, why that particular subject developed Parkinson’s disease. And from that we’ll finally have a personalized treatment followed by hopefully, very soon a precision medicine approach. Personalized treatment means that you take into account the features of the patient and and then you adjust the treatment based on what you see. But precision medicine is really driven by biomarkers, genetic conditions, what we call the exposomes. So what happens to the person’s life, environmental factors, and based on that, you can tell, okay, this patient has this, this this and that. This is why Parkinson’s developed. And because of this, we need to address the problem with this particular strategy or therapy or medications or surgical treatment. So, this is precision medicine, and it’s not just, you know, science fiction. It might be at the moment for Parkinson’s unfortunately, but in many conditions like oncology. Oncology, as we know, often the tumor can be characterized so well at the molecular level because of the sample that the surgeon obtains during surgery, for instance, that we know now what’s the gene that caused the problem. What’s the mutation that caused the problem. And depending on what is found, then the oncologist will adopt different paradigms, different approaches. So, the same should apply, should happen hopefully soon to any diseases, to any disease, including Parkinson’s.
Hanh:
So, how will Parkinson’s affect someone’s life physically and mentally?
Alfonso:
Yeah. So, I should say that obviously having seen thousands of patients with Parkinson’s, or if you want, you can call it. “People with Parkinson’s.” There’s a little bit of a debate to what’s the best way to call them. ??? Todd and I like the term patient, because he comes from a Latin word, which has a lot of meaning. But, having seen many patients, I can say that, regardless of where they’re from, obviously I’ve been practicing different countries and regardless of their socioeconomic status, their beliefs, their religion, their family supporter, or what, regardless of all of this, the disease affects each individual to some extent in a very similar fashion. The most, and perhaps most disabling part is dealing with the diagnosis. Knowing that you have a chronic condition, doesn’t help. Knowing that you have a condition with no cure, doesn’t help. But it’s not just that. Hearing that name Parkinson’s carries a lot of stigma. So, often most of the time I spend with my patients is discussing the diagnosis of what it really means. And for years and years, the major problem that some of my patients have is not the motor problems or the no-motor problems I was telling you about. But this is really, coming to the conclusion that yes, they have something they need to live with and accepting that. And it takes a lot of time, a lot of resources. And probably, as physicians, we don’t spend enough time discussing the psychological implications of being diagnosed with a chronic disease with such a terrible name. I should also say that there’s a lot of misinformation as we discussed before on this condition. A lot of people don’t even know what they’re talking about, yet they think they know, because they heard about this a lot of time. Sometimes they get confused between Parkinson’s and Alzheimer’s. Sometimes they think, “Oh, I’m going to be in a wheelchair in five years or going to die soon.” So, instead reality is very different and we can talk more about it if you want.
Hanh:
Sure. Sure. So, what are some techniques for managing stress when living with Parkinson’s disease? Let’s say pass times or medications now?
Alfonso:
Yeah. So, managing stress starts from understanding what’s going on, to have a sense of, an awareness of what’s going on with their body and with their mind, and side effects of medications. But more importantly, really, is being able to connect with there doctors, their care providers. And it’s not just a doctor business here. We need psychologists. We have psychologists, psychiatrists, nutritionist. There’s really, a variety of people that should be taken care of people with Parkinson’s, because it’s a really sustaining disorder. The effects from constipation to urination to pain. There are many things that happen to someone with Parkinson’s, and yet it’s not always the same. So, every person is different. And this connection, is not just with care providers, but it’s also with peer, with peers’ patients. And one of the positives of the pandemic, and I think there are many, in the end and one day we’ll be having this clear in our mind, is that these emphasize the need of connecting to others, to other human beings. And social media is actually quite useful. I’m pretty amazed by the ability of patients to create a network, just to mention one, PD Avengers. You can find them on Twitter @PdAvengers, and the website www.PDAvengers.com. And this is really more than just a support group. Actually, if anything, these are patients supporting doctors, they’re supporting research, they’re giving us ideas. At Toronto Western, my hospital, we are very proud to have a patients advisory board. So, patients are no longer an object of research or taken care of by a doctor. Patients are really an active part of a team, and that helps managing distress because they, for the first time, realized that they have a hand on the disease. They can really make a positive impact helping others that also gives them some sense of being in charge of what they’re doing in their life. And, often people with early diagnosis, as I mentioned before, are quite stressed. And what I do is making sure that they connect with other patients, who went through the same. Like I said, we’re all humans. We all go through the same thing, the same way. And this sense of connection is helping each other, really validate their scope in life. And in a way, validate the fact that they have a disease, because at the end of the day, everybody’s going to have a chronic disease. The way you deal with it makes the difference.
Hanh:
Yeah. You know, everything that you’re describing, in my opinion, what a blessing to have access to the available support system, right? Cause I think years ago, you know, like I mentioned to you before the show, I painfully go through the journey of care giving with dementia and now seeing family members taking care of another family member with Parkinson’s, you feel very alone and less then. And even maybe embarrassed, right? Who’s going to put themselves out there and saying that, you know, you’re going through this journey. But I think it’s great that we can tap into social media and tap into conversations like this, to give hope and to give people knowledge, because I think knowledge is very empowering. So, I thank you for sharing this, your work on this platform.
Alfonso:
Oh, my pleasure. As I said already. On the topic of embarrassment. Yes, absolutely. But there’s very little to be embarrassed here. I always talk about a dear patient of mine. His name is Benjamin Stature, and he has a blog. It’s called Tomorrow Edition. Tmrwedition.com. He’s a young Parkinson’s disease patient. And one of the first things he did actually, was telling the world that he has Parkinson’s. There is nothing to be embarrassed by, and is actually inspiring a lot of other patients to come up and tell the world what’s happening to them. And, this is actually creating a very positive environment for future patients to be able to openly share what’s happening to them. Again, I’ve seen many patients, and some of these patients, thankfully don’t have any visible sign, right. You can’t tell they have a problem. Yet, they’re in a lot of distress because they spend their day and their lives trying to hide their condition. This is particularly the case for people who are still working and they don’t want their coworkers to know. And that causes a lot of problems because they spend the day with this fear that someone is going to see a little bit of tremor and who cares, everybody shakes. So, most of what they do is basically telling them that they need to accept what’s going on and being open about it. Obviously I can’t do more than that because at the end of the day, it’s a personal decision, but I’m absolutely sure that the more people try to hide what they have, the more stress they go through. And there’s no reason to do all this.
Hanh:
I agree. I think, you know, conversations like this, I hope to magnify the message that regardless of the physical, mental condition that you’re in, illnesses that you might be facing with, sure, it’s declining, but there is life in the decline. And that’s what I hope out of this conversation.
Alfonso:
Yeah. As I said, already, there are, thankfully a lot of therapies. None of them is a cure, as we know. But they are doing an amazing job. Obviously, tot everybody responds the same way. I mentioned right from the start, our heterogeneous dis-condition is, therefore, yes, the same medication might work beautifully for one person, not so much for another one, or in another one, may actually worsen things. It’s a trial and error because we don’t have a good bio marker. We don’t have a precision medicine approach as we discussed already yet, we have good therapies, starting from drugs to intervention, but even physiotherapy, aerobic exercise, Mediterranean diets, a good lifestyle. All of these are a profound effect on the disease. And people don’t die from Parkinson’s anymore. They can live, I’ve seen patients who were living Parkinson’s for up to 40 years, and this was considered to be impossible in the past. We say there is no cure. Well, before we had Levodopa, people with Parkinson’s would die on average after nine years. Now, if you die from Parkinson’s nine years into the disease, it means that you didn’t have Parkinson’s in the first place. It was something else. And this is because of Levodopa, a simple drug, discovered almost by chance many years ago, as profoundly changed the natural history of the disease. So, yeah, it’s not a cure, but in a way is close to a cure because people live a lot longer. Now, quantity of life is not exactly as quality of life. And we recognized that. And that’s why most of the research now is trying to manage, what’s not responsive to Levodopa. You mentioned balance disorder, balance doesn’t necessarily improve with Levodopa and this becomes a big problem for a patient at some point. And with balance problems, you might have a fall and a fracture. And from a fracture you may end up in hospital and maybe with a complication, And these may eventually lead to death. So, the reason why we need to focus on what’s not at the moment managed well with drugs, of surgical intervention or physiotherapy, or the other interventions I mentioned before.
Hanh:
So, you answered this to some degree, but I want to ask you, like, are there tips on how to get rid of the depression from dealing with this debilitating chronic illness?
Alfonso:
Absolutely. So, I will divide my answer in two different layers. One is the psychosocial adaptation I was talking about before, being part of a support group, try and support, trying to find resources. And we discussed already our good, our social media in this regard. Social media can be source of a lot of stress. A lot of misinformation, a lot of misbeliefs, a lot of bad things, but also, they can really be useful. Having a very good care partner makes a difference. I’ve seen the huge difference in people’s life when they have a chronic disease and a caring care partner versus when they’re alone or even worse with the wrong care partner, who doesn’t really care, even though we call it a care partner. So, this is the first layer. The second layer is more biological because people need to realize that depression is part of the disease, it’s an expression of the disease. And now, it’s not the classic depression is not that feeling of sadness, it’s not that melancholic feeling of everything is black. It doesn’t, I don’t have purpose. I want to kill myself. I cry. In Parkinson’s depression has different flavors. It’s more on the apathetic side. People don’t have motivation to want to do things. They have anhedonia. Anhedonia means lack of pleasure. They don’t have any positive reinforcement from going for a walk, from exercising, because that doesn’t give them back anything in terms of pleasure. And humans do only what causes pleasure. So, this is more biologically related to the disease and it really taps into the deficiency of dopaminergic terminals in the brain. So, a lack of dopamine. Often Parkinson’s patients are prescribed with antidepressants, but very rarely they make the difference. They may make the difference if there is a real depression, but if we’re talking more about this apathetic syndrome, that I was telling you about, lack of motivation, these patients don’t do well until they receive enough dopamine. And to just as a corollary to what I’m saying, there are some patients who only fluctuate in terms of no motor problems. So, fluctuations are the ups and downs of symptoms in Parkinson’s. Most of the time, the fluctuations are motor fluctuations, meaning that the patient takes the medication, as well. Then the medication wears off and the tremor comes back. Sometimes there’s no tremor coming back. There is sadness coming back. There’s depression, just for a couple of hours, or anxiety. Even a panic attack. So, this clearly tells us that instead of giving them antidepressants anxiolytics, we just need to give them what they need, which is dopamine. And then these will take care of motor and no motor problems. Sometimes we overdo this and these explain why some of the patients medicated by doctors might have excessive seeking pleasure, like, you know, going for shopping or hypersexuality, or eating too much. So, this is exactly a pendulum that swings in the other direction. Exactly, like if we use too much medication, also from a motor perspective, people may move too much. So, they swing from not moving enough to having something we call dyskinesia, which is basically accessive movement, like a dance. The same occurs from a behavioral standpoint, but at a depressed patient, a depressed, But in reality is more of an apathetic, an hedonic patient needs dopamine. And if too much dopamine is given then they will become more addicted to pleasure, more, you know, into the opposite spectrum of the problem.
Hanh:
Yeah, I, as you’re speaking, I’m just thinking I painfully witness a family member when he has the right medication or balance of medication, and when he doesn’t, it just everything that you just described. And it is tough. It’s tough because you can go like this and then you can go down like this in a short window.
Alfonso:
Yeah, it used to be tough. I mean, it is still tough, but the good news is that we have good therapy to take care of these ups and downs. There are pumps that can give Levodopa, constantly. There is a brain stimulation that stimulates the brain always the same way, day and night. So, research has done really big steps in improving these ups and downs. It used to be a big problem many years ago. It still is a big problem for people who can’t have access to these advanced therapies, who can’t afford these advanced therapy, which are of course more expensive. Not every country has access to all of them. So, there’s still a lot to do in terms of disparity to access to treatments. In countries like Canada, with our practice, we are lucky enough that all patients have basically access to all the advanced therapies. We can do them all, which doesn’t necessarily mean that every person can get them, because sometimes the person is simply too frail to get through them. The other day I saw a 76 year old patient. Very smart individual with a lot of tremor, not responding to medications. And usually these patients do well with brain stimulation. Deep brain stimulation is one of the thing they do. At 76 though, it’s a little dangerous, now. So, that’s the other reason why education is so important. I not saying that now, everybody needs to rush and get DBS as soon as possible because later on it won’t be possible, but people need to know the complexity of the decision behind any treatment selection. And not all the things we do treat everything. And more importantly, some of the things we do to help certain problems might bring on others. So, you might go for a procedure to help your tremor. The tremor goes away, or your speech worsens, your balanced worsens. So, it’s always a delicate balance between deciding what to do. But to your point, these ups and downs has a lot of therapies now, thankfully.
Hanh:
That’s great. That’s great. I want to take a moment just to pause and acknowledge our guests. You want to, oh, wow. Okay. So, do you see the comments here from which one you want to take here?
Alfonso:
Okay, let me see if I can see them. Oh yeah. Okay. So, there are. I can try to answer them one after the other, maybe, very quickly. So, “Do you have any opinions on the use of virtual reality technology to measure outcomes and improve motion/balance/emotional issues? Movement is medicine.” Absolutely. Movement is medicine and virtual reality is something that we currently use in our gait lab. This is a way to really make powerful rehabilitation because that’s also come from neuroscience research. We have something called Mirror Movements. We have techniques like Motory Majorie. So, we know that when we think about something, actually the brain does that. If I think about eating the area in charge of moving my hand to bring the fork to my mouth will activate, even if I’m not doing it, simply thinking about it. If I see someone doing something, the area that does the same activity will activate in my brain. So, this combined with virtual reality really makes the whole thing more powerful. It creates a more widespread activation of the networks in charge of these activities in the brain, and certainly makes things better. So, Benjamin was the patient I was telling you about. He thanks me for mentioning him, “Unfortunately, I need to go now.” Okay. But he “Would love to hear my thoughts on whether or not PDs (plural), should be synonymous with aging and why or why not?” Well, we can address this right from here. PD is not same as aging, but with aging you might have PD or. PD like signs. It’s being called Mild Parkinsonian Signs of Elder lies. This is not saying that everybody’s going to have them. It’s not saying that, “Oh yeah, it’s normal.” No, it means that there’s some pathological changes in the brain that just by chance, or simply given enough time to the brain to develop them, you see. A lot needs to be done here. I always say that the easiest Parkinson’s to cure one day would be the young onset. Parkinson’s because the younger the person, the stronger the effect of a single gene, and if you have a single gene that we can treat, because we know what’s the missing part then you in a way, at least take care of that problem and then the disease, at least doesn’t worsen. But Parkinson’s of the late stage, not late stage, the late age is more of a multifactorial problem coming from genes, environment, what happened to you, trauma, stress, if you smoked, if you didn’t. So, I always say that treating this Parkinson’s that late onset Parkinson’s disease means treating aging. And I think it’s so difficult. We will be all, you know, living until 200, 250 years, and this is not possible at the moment. We can talk about it if we have time, but let’s make sure that people understand that we are not saying that Parkinson’s is caused by aging. We are not saying that any aged person will develop. Parkinson’s. The paradigm of aging is still a good title, I think, for this episode today, because like I said, treating late onset Parkinson’s disease will mean having a handle on what aging really is and improving it. Larry is saying “The issue of connection is important across other neurodegenerative diseases, too.” Absolutely. We’re learning from Parkinson’s but the same applies to many other conditions. Absolutely. “That is a great idea. And it works well for those with dementia.” (quote from Michael). Michael is saying, probably referring to something we were talking about before. Lorretta is saying “Love the idea of connecting new patients after diagnosis with those who have been through it!” Absolutely. Those patients do a great job. They help me a great deal. We are doing the same or trying to do the same for people receiving deep brain stimulation. And often people who are considering deep brain stimulation or any other therapy, they want to talk with someone like them who went through the same process and got the therapy. And I tried to help them. But I always say the same thing though. I say, “Look, I can make you talk to someone who had the therapy” and had a great improvement. And if so you want to have surgery the next day, or I can make you talk with someone who did the therapy and maybe had the side effects or didn’t “improve as much as they expected to. And then you do want to have the therapy.” So, I want to emphasize that I have some power in steering them towards accepting or not accepting the condition because we need to acknowledge that everybody’s different. Everybody responds to different degrees. So, I still favor this type of connection. But we always need to keep in mind that everybody’s different. Michael is saying, “Can Photobiomodulation Therapy Helmet help in any way? Or other types of technology?” Interesting question. Actually, I came across this video a few days ago. It was sent to me by a dear friend. I think you’re referring to a research going on in Australia. And in short, the answer is no. Yet you see great results on videos. You see patients putting these helmet on and they can move, but I can tell you, there are patients that smoke marijuana, they improve. There are patients that put their feet in a special device and they move much better. The big problem, and actually I tweeted about it, is placebo. Parkinson’s patients are extremely sensitive to placebo. There is research showing from years ago that when we are experiencing placebo, we just have a boost of dopamine in our brain. So, it’s a biological effect. So, anything that you see online, make sure that there is a study that is placebo controlled, plus and randomized and double blind. What is this meaning. I’m going to explain? Placebo control means that a group of patients will receive the sugar pill, the fake therapy. Randomized means that there is no way we can pick which one is going to get the real therapy and which one is going to get the placebo. So, that is really by chance. Double blind means that neither the patient, nor the doctor knows what’s the treatment allocation. Many people think that this is being a Guinea pig, but it’s actually the way science moves forward. And without it, we are not able to make any claim about efficacy because being humans, we are all at the mercy of placebo, doctors included. If I give you a medication, I hope that you do better. And so, I might be biased. I might think you’re doing better, even if you are not. So, science moves forward with these types of studies. And I think doctors are not doing a good job in explaining what these terms are and why this is needed. Why it’s needed to have studies, enrolling many patients or enrolling minorities. There’s a big problem in the states, for example, there are not enough Latinos in studies or not enough women sometimes in studies. So, it’s important to talk to patients, to their family, so they understand the value of being part of research because this will help them and future patients. Well, okay. Let’s see. Okay. So, I think we’re done for now.
Hanh:
Yeah. Yeah, I think we’re good. Thank you. Thank you so much. Okay. All right. So, the next question I have, is that, is there any evidence that demonstrates that genetics increase the risk for developing Parkinson’s?
Alfonso:
The question is whether there are, evidence of, there are certain things increasing the risk of Parkinson’s? Or?
Hanh:
If there’s any evidence that demonstrates that genetics increase the risk of developing Parkinson’s?
Alfonso:
Oh, yeah, it’s…
Hanh:
Increase the risk of developing Parkinson’s.
Alfonso:
Yes, a lot of evidence, and actually these stops into one of the comments I was reading before. So, as I said before, the younger, the age of the onset, the stronger the effect of genetics, but he’s always a combination. We know this from twin studies. Twins have the same genetic background yet one might have the disease, the other one might not, because it’s always the very complex interplay between genes and the environment. Now, while we can easily, easily, assess genetic backgrounds because DNA is that it doesn’t really change too much, actually should not be changing even though people might talk about post transitional changes. But anyways, I don’t want to be too technical, but just to simplify. DNA is there, it doesn’t change, but we can assess it at any moment in life. Environment is complicated. How can we make sure that the person has been exposed to a toxin, even if we don’t know the toxin? Or how we can tell if someone has smoked too much, if it wasn’t a smoker, but there was a smoker in the family or the other way around? So, it’s very difficult to really have an handle on what the environment makes, or how the environment contributes to the disease in the end. We have some data, however, so in terms of genes, we know generally speaking that having a family member with Parkinson’s increases the risk generically speaking, that someone else in the family will have Parkinson’s disease. And this risk is obviously greater, depending on the age at onset of the disease. This makes sense because the younger, the person in the family, the higher the risk for someone else in the family. But we have genes, now. We know that there are genes causing the disease. And it’s funny because the very first gene causing Parkinson’s, which is the gene that led to discovery of alpha-synuclein is the gene encoding for a protein called Alpha-Synuclein was discovered in a town, which is basically a half an hour away from my hometown in Italy. It’s called Contursi. And it was discovered by an American group. I was there. I went there, and this was in the nineties. And before this, there was no evidence that genes were actually playing a role in Parkinson’s. There were people at conferences arguing whether. Parkinson’s was genetic or not. And many people back then used to say, “No way. Parkinson’s is not genetic.” And now this was one gene in the nineties. We have a long list of genes, even, you know, 20 genes so far. Obviously they cause different phenotypes. Some of these genes have a very strong effect. So, if you have a mutation of the gene, you will have the disease. Some others are more modifiers or they can just increase the risk. Some of them is GBA. It’s another important gene. When you have a GBA mutation, it doesn’t mean that you’re going to have Parkinson’s for sure, but we know that you have an increased risk. And the same, you know, there’s a variety in between also, depending on the actual mutation that we’re talking about. Certain GBA mutations are for sure linked to Parkinson’s. Some others are less linked to Parkinson’s. So, this is a complex topic, but it’s expanding very fast. Another gene very popular is LRRK2. Up to 5% of our patients with, or without familiy history, have a mutation of LRRK2. And we know what this gene does. And there are now therapies in trial, specifically designed for people having a mutation to the LRRK2 gene. So this is how the field is moving. So, I guess this is the shortest, believe it or not answer to your question.
Hanh:
There’s a lot to cover. And I know we have a lot of questions, so I appreciate you trying to, you know, explain this complex disease in, in a short amount of time. So now is there anything in our diet, lifestyle or environment threatening our health and safety? I know we touched on it earlier, but let’s deep dive on this.
Alfonso:
Absolutely. So it seems to, Different studies at this point have emphasized that the Mediterranean diet, has a good impact on the disease. It reduces the risk probably, but even if not, when you get the disease, your disease tend to be milder. And this is probably because the antioxidants in olive oil or on the vegetables. So basically the basic or the meat, the Mediterranean diet, there is also strong link between, resistance to insulin and Parkinson’s. And so, you know, the BDS is expanding in my lot of people now have diabetes, type two diabetes. And not, surprisingly, there are now trials using diabetes medications for Parkinson’s. So even there’s a connection within the nutritional state, the energetic state of the brain, and. And Parkinson’s. Because the cells of they’re degenerating are very sensitive to this type of insults, metabolic insults. So it makes sense that your diet will make a difference. Another big one is exercising, and there are studies now showing that aerobic exercise have an effect on the disease. Some people argue that they can also be neuroprotective. Obviously, we need more studies, but my experience tells me that, if you have Parkinson’s and before you got Parkinson’s, you were having a very active life with a lot of aerobic exercise, a lot of movement. Your Parkinson’s will be more benign than the same type of disease that is affecting someone who spent their life sitting on a couch. And this is actually what I tell myself every morning. I say, I should exercise more because one day I’m going to have a disease and it’s better to be ready. And one way to be ready to eat well, to move more. A little more controversial is the effect of coffee, cigarettes smoking. So I won’t cover it. But there have been studies also looking at it, and they’re also studies giving caffeine or nicotine patch to patients to see what happens. And I’m just mentioning so that people understand why these types of studies are being done.
Hanh:
I concur with you, you know, in the back of my mind, I’m telling myself that live as if you’re going to have something in the future. So make these choices every day. Like I asked myself, what can you do today? Just the things that you mentioned, you know, proper diet, exercise, sleep, reducing stress, and so forth. Right? And let me tell you, it resets my attitude right away. You know, when I’m in this mode that maybe you don’t want to do anything, but, it helps, it helps you get motivated to take ownership of your future. So, thank you.
Alfonso:
Absolutely.
Hanh:
Now, for those of you in the audience, we love it that you share your thoughts and comments and, you know, thank you for being here. So I’m going to acknowledge any further comments.
Alfonso:
One thing I saw is that people are asking about this support group I was talking about the PD Avengers. This is a group of superheros, Parkinson’s patients superheros. They’re helping each other, helping others, and open to any sort of participation from others. I’m sure I know some of them and they are exceptional people. So PD Avengers, check them out. But you know, you can also ask your doctor. Maybe the other important piece of information for people, here is to make sure that your doctor is a Parkinson’s specialist. And that’s the other problem. There are countries where there are one or two neurologists and obviously they need to do everything, but in Western countries, you know, fortunately we have specialties, so there are Southern neurologists devoted to Parkinson’s. We call them movement disorders specialists. So make sure your doctor is one of them. And, by that, you can simply ask them, is there any resource for me? Is there any support group I can tap into? Again, or I can reach out? And they will know.
Hanh:
Okay. Oh, hello, Alberto. How are you? I love this interview with professor Fasano. He is one of the brightest minds in neurology, and. I always learn from him. Thank you, Hanh for having him. Oh, we love you too Alberto.
Alfonso:
Yes.
Hanh:
We love you too.
Alfonso:
Alberto is a dear friend and he’s too kind as a always, but, since we are live, I won’t say much because I know so much about him and he knows so much about me too.
Hanh:
I see. Well, we’re looking forward to having you back, Alberto. Okay. So the next topic is huge. Caregivers. Do you have any advice for caregivers dealing with the emotional toll of Parkinson’s.
Alfonso:
Yeah. Besides the obvious advise of connecting and seeking information. I think an advice I am giving often now is to make sure that they have some time for themselves. A caregiver doesn’t have to be 24/7 with the person needing help. A caregiver needs time off to release the pressure, to enjoy life, to have fun, which doesn’t mean that this can’t be done with the person with the problem, but sometimes a a little bit of time alone is needed. It’s needed in any context, not just when you’re dealing with a disease. And I noticed that sometimes caregivers have this sense of guilt, that if they go for a vacation alone, it’s bad. Not at all, one important piece of information for them all is to, they need to know that it’s actually shown that caregivers often have a pooer quality of life than the patient, or they actually get sick more often than the patient or other people who are not care giving for someone. So they need to take care of themselves because they may be needed at some point in their life, or the person they’re caring for. So there’s no need to be attached to the other person, 24/7. There’s no need to mother the person or to father the person, or whatever. It’s good to be a partner in a disease. This is a complex condition, like many conditions we face nowadays in cronic diseases. We are dealing with chronicity all the times. And the way to deal with this is to create a team, a support team, the doctors, part of the team, all the other care providers are part of the team. The patient is part of the team, the caregivers a part to the team, but it’s not that we need to be stuck to each other all the time. It’s good to have some time off, some time for yourself and recharge so that you can go back and do what you’re doing even better than before. So that’s, I think an important piece of information that people need to have.
Hanh:
I agree, you know, one additional change, a challenge, I mean is sometimes when you try to get help for your loved one with Parkinson’s or dementia, they’re not receptive to that change. Okay. I know we need a team. We need family members. We need an outside caregiver. You know, all those members are very important, but it’s a challenge to get your loved one to embrace that change or a new faith. And then sometimes the caregiver, like in my case, my sister, I mean, we’re concerned, is she going to go first before, you know, her loved one? So that’s, it’s very important. And somehow we got to integrate that relief date into the day-to-day life of the caregiver and work on having your loved one, accepting that new help.
Alfonso:
Absolutely. And what you’re doing, educating the communities is very important to that. Caregiver needs to know the disease. I often find that some caregivers don’t understand what’s going on. You know, I’m telling my husband to move, but he’s always on the couch, no moving. And he says he’s stuck, but then when he’s here with you in the office, he moves better. That’s a typical complaint. Now, Parkinson’s patients tend to move way better if they’re in a different environment. If they are with strangers, with a doctor in a wider space. So, if at home they got stuck in the bathroom and they can’t move. It’s not because they want to piss you off. It’s just because the disease does that. So education sometimes, resolves the conflict because sometimes they even argue in the clinic in front of me, so see you’re doing well. Why do you fake your problems at home? So this is just an example. So education is key in this regard.
Hanh:
So, do you feel like the general public has, I guess is informed enough about Parkinson’s?
Alfonso:
Hmm, that’s a very good question. I think, the education on this condition is much better than it used to be. But the problem that internet brings is the noise. The signal to noise ratio is very low. If I type Parkinson’s on Google right now, I’m bombarded with lots of information and I’m pretty sure that 50%, 60% of them are wrong. Yet there’s 40% of millions of records I can access to, which are spot on. So there’s access to a lot of information. Perhaps what’s missing is a guidance. That’s why I emphasize the terms of research, placebo controlled randomized, what these things mean, because people need to know where to go, where to find the information. And I would say don’t just surf the internet, looking for answers yourself. If you want to do that, ask for help. If you want to know what I would suggest, I would say if you know enough biology, go on PubMed. Gov, which stores all the articles, all the scientific articles. And this is where you may see good information or go to the Michael J. Fox foundation website MichaelJFox.org. Go to Parkinson.ca website. So go where there are usually scientific advisors that whatever is posted has been evaluated by a team of scientists. Because like I said, you can find really anything on the internet. You can even that, I don’t know, onions are the best therapy for tremors. I just need to do a test. I can look it up right now and I’m sure I’m going to find 10,000 things on onions and Parkinson’s, I’m just making it up. Maybe there’s nothing, but this is just an example that there’s too much going on. There is a lot of, also economical interest. There are a lot of companies, let’s call them companies trying to steal your money, claiming any sort of benefit from therapies. And some of these companies are actually even telling you, look, we can give it to you for free just for a month. You try it, and if you like it, you can buy. And they basically take advantage of placebo effect. You use it for a month. You look great. You buy it, a month later you are not doing so great. So be careful and document yourself with making sure that there’s scientific evidence supporting that what you are about buy, or what you’re getting into has some benefit.
Hanh:
So, you mentioned some resources out there that we all can tap into. Now, how about you and I and the audience? How can we raise awareness for people with this neurodegenerative disease, Dementia or Alzheimer’s or Parkinson’s? So, what can we do more to bring that awareness?
Alfonso:
What you’re doing, to begin with, interviewing people. I would suggest that you also interview, I don’t know, maybe you’ve done it, patients and caregiver, so that people get to the sense that we are all facing the same issues. You know, human beings are the same. It’s impressive. All similar, Our needs and fears are regardless of where you are. I’ve seen patients pretty much everywhere in the world. You know, sometimes we travel for conferences and the questions are always the same. So, what you’re doing right now interviewing me and professor Espay, and whoever, is great and helps and helps a great deal. I’ve been searching on the internet and see your website, your page on Linkedln and Twitter. And all you’re doing is great. And like yourself, there are other people, trying to educate the community out there and using the internet. And these are all great efforts in trying to fill this gap between the doctor that knows everything and the patient who is just an object. Now, the reality is that doctors very often, know very little. And we should be better at acknowledging our ignorance. And patients actually know a lot. Some of them are actually scientists themselves or in any case, they deal with the disease. So, we have a lot to learn from them. So, to your question, I think we need to have more common ground, more shared information, more ways to get together. And without any hierarchy, we are all in this together and we can learn from each other.
Hanh:
I appreciate that you set that, without hierarchy. Right? Sometimes it’s misperceived to be one talking down or directing and so forth, but we’re all at risk in my mind. So…
Alfonso:
Of course.
Hanh:
Do you, do you have a little bit more time that we can acknowledge more folks on chat?
Alfonso:
Sure, sure.
Hanh:
Let’s go through them. I know we’re at the tail end, but let’s acknowledge some more. Which one you want to take here, or?
Alfonso:
Let’s start from Christopher. Christopher is a Twitter friend and we’ve been exchanging some ideas in the past. Super foods and other. Psycho pseudo-scientific cures you’ll find online. Well, yeah, let’s start with vitamin B1. There was at some point, a lot of hype around the user by the vitamin B1, claimed to be the cure of Parkinson’s. Nothing can be the cure of Parkinson’s. If someone tells you, “We have the cure of Parkinson’s.”, it’s wrong. They may tell you, “We have a study to slow the disease progression”, if you have this mutation, if your Parkinson’s is A, B and C.”. There’s no, as you said, at the beginning of this interview, there’s no one size fits all. So, any claim of this type is absolutely wrong and that helps you understand where you’re talking about study that has no scientific validity. Super food, same stuff. You know, we just need to have a balanced. Mediterranean’ish diet. You know, it’s one of the things I miss the most being in Canada, and that’s the reason why I go to Italy every once in a while, but you know, you can do a good job just starting from what you buy when you go to the grocery store. One problem that Parkinson’s patients have when they’re on drugs is they can’t say no. I call it the cherry effect. When you have a cherry then you want to have another one, then another one. So, if at home, you have any sort of junk food, you’ll eat it all. If you don’t have it, you won’t eat it. So sometimes a good strategy to have a good diet starts from what you buy at the grocery store. And some of my patients said, “Well, but what about my kids? They want to have this.” And then I don’t know. Sometimes I come up with ideas like, you know, use a different fridge, use a lock, do something, but don’t let them see it. Larry Linden is saying that “This topic is better on to the young onset of. Parkinson’s disease. Changing roles, changing the relationships are the extra burdens we face.” Absolutely. The impact of the disease on the economical income, on the partnership and really the going out for dinner, seeing friends, sex life, having a significant others next to you. All of this is not well-recognized. And this is burden that all neurological, but in general, chronic diseases have. And more needs to be done in terms of psychosocial support. But also in understanding that often you need to go for the strongest therapy as soon as possible. An important point here is that if your psychosocial adaption is going down, if you’re losing income, if you’re not showing up to work as you used to all the time, it’s not time to play with drugs or let’s try these experimental therapy there. No go straight for the brain stimulation. Go straight for Levodopa pump. Do something significant, because it might be too late if you do later on, because you might lose your job, you might lose your partner. You might lose your friends. And it’s very difficult to go back. A colleague of mine from Germany Jenz Volkman once told me the story of this policemen who had a very fulfilled life, very active. And he reached a certain level of disability. He waited. He waited too long, maybe. And, I should say, his doctors more than anything. He had one DBS and he ended up in a nursing home depressed. And when he spoke with Jens Volkman my colleague, he said, “Look, I can move. I don’t have any tremor, anymore. I don’t have any fluctuation. I don’t have dyskinesia. Yet I’m here in a nursing home alone. And I lost all I had before.” So, this is what changed the approach to these advanced therapist these days. Let’s see if there is something else. Thank you, Loretta, for your words. So, Larry says, “I’ve been living with PD for 10 years, and my advice is” don’t wait for the pain or the diagnosis go on living, focusing on your life. “Live like you have just got bad news today.” Absolutely. Or you can even live without having, without thinking about any bad news. Just live your life. And don’t worry too much about the future. I’m an anxious person myself. And sometimes I find myself thinking too much about the possible negative consequences that never happened. And in any case, I ruined my present worrying about the future or remodulating about the past. We should all live in the present. And this is because we are going to die. We are going to have a disease at some point. So, Latins used to say, “Carpe Diem”, which is grasp the moment. And that’s so true. Then, I see that someone posted the website, www.PDAvengers.com and other important websites, actually, there’s also this idea that women are not enough represented and there’s not much attention to them.” Absolutely true. There are great women out there, some of them with Parkinson’s. One of them is Sara Riggare. She just published her PhD thesis talking about the impact of the disease in her life. (See her website) www.riggare.se. And, she’s also very interested in this connection with women. I mentioned already the disparities, in research studies where women are not enough represented sometimes. So, that’s another important topic, which in general taps into the topic of gender equality, which is a very important one these days. Let’s see. Oh yeah. Michael, is talking about he’s living with ALS and frontotemporal dementia. Yes. So, these are other diseases, with a huge impact, possibly even more than Parkinson’s because they don’t have an effective symptomatic therapy. At least for Parkinson’s, we have some that can make an impact on the symptoms. For ALS and FTD, there is is nothing. And, actually I always say that obviously donation for research is always important, but when I personally donate money, I usually don’t like money for ALS research because it’s really the one that has no symptomatic therapies. So, life for people with ALS is not the greatest, as we know. Interestingly, there are new developments, reasonably, there are many new drugs, there’s new understanding on the mechanism of the disease.
Hanh:
Great. Great. Great. Gosh, thank you so much. Do you have anything else to add Dr. Alfonso?
Alfonso:
I just want to thank the audience for being with us this morning. It’s always nice to have an exchange, go home with some new ideas. And, today’s conversation really made me think more about some of the things I said. And, it’s good to, like I said already, share experience. And, I always learn something new. So, thank you all.
Hanh:
Yes. Thank you so much for the folks in the audience to be a part of this conversation. Every question that you bring up, it also makes me think. I painfully go through the journey of seeing my family members going through dementia and Alzheimer’s and Parkinson’s. So, I think we are all in this at some point in life. And I thank you so much for Dr. Alfonso do the work that he’s doing and hopefully a cure someday. So, clearly Parkinson’s is a disease that has a wide range of consequences for our society. While prevention is difficult, there’s ways to manage the symptoms and live with it. Patients with this condition and their caregivers may benefit from support groups like Dr. Alfonso mentioned. Parkinson’s has a wide range of consequences for our society, from caregiver stress to hospitalization costs. And our understanding of this genetics and environmental causes is gradual elevating this to a status of diseases. So, I hope that you found this conversation interesting. And how can the guests find you or follow you? Dr. Alfonso?
Alfonso:
Well, I guess, they can reach out to me on Linkedln, or the many platforms where this has been posted. And I did it myself, so they can see my handle, my name. So, I think it’s easy to be in touch.
Hanh:
Great. Great. And make sure to subscribe to our YouTube channel Aging Media Show, to get notified of new videos on healthcare series for seniors. And you also get an email reminder before the video goes live on YouTube or Facebook. And again, I appreciate your time, your interest, and we can’t wait to see you again next week. Take care.
Alfonso:
Bye. Bye.
