This isn't your grandparent's Parkinson's anymore. Hear the latest in advancements in Parkinson's Disease treatments from Mount Sinai Medical Director and Associate Professor of Neurology and Neurosurgery, Dr. Joohi Jimenez-Shahed.
This isn't your grandparent's Parkinson's anymore. Hear the latest in advancements in Parkinson's Disease treatments from Mount Sinai Medical Director and Associate Professor of Neurology and Neurosurgery, Dr. Joohi Jimenez-Shahed.
(soft music)- Hi, I'm Margaret Preston, president of Power Over Parkinson's. And today in conjunction with our pop profile series, we have Dr. Joohi Jimenez-Shahed here neurologists at Mount Sinai, also the medical director of movement disorders, neuromodulation and brain circuit therapeutics, and finally the associate professor of neurology and neurosurgery at the Icahn school of medicine at Mount Sinai. Joohi thank you so much for being with us today.- Thank you for having me appreciate the opportunity.- Yeah, it's our pleasure. Well, if you're ready to get started, we'll jump through some of our questions and meet again at the end.- Absolutely, let's do it.- Great, thanks. So as we begin our discussion, tell our listeners how you kind of progressed into a career in neurology.- Yeah, that's an interesting question. I started out my career probably over 20 years ago, so it's been a little bit of a while. I think when students get into medical school, they have lots of different ideas about what they think they might want to do. And in the end as they go through their different rotations, you get to experience a little bit of kind of a slice of life as a different kind of specialist. And you ultimately settle on what it is that you like. And so I did the usual thing. I started out with one idea, and then I got a second idea, and finally settled on neurology, but I think it was, it was the right choice. The reasons that I really thought neurology was the right career for me, just had a lot to do with the patient population and the types of disorders that I know patients are facing. And it just felt really right to be able to try to better understand both the problems that these patients were having, but then also the changing landscape of the therapeutics that were available. And it was really apparent to me at that time that things were going to be changing in neurology. And we were going to have a lot more treatment options now than we did even back then. And so I felt like there was a lot of excitement in the field and I think that's definitely been born out in what I've seen over the years.- Yeah, I think that definitely holds true even to today, 20 years later.- Yeah.- That's great.- Well, so I'm going to tell our listeners that you were also on the science advisory board for the Davis Phinney Foundation. And as many of our listeners know Davis Phinney focuses on living well with the disease. So in a few short takeaways share with our listeners, what are some things that they can do to live well with Parkinson's disease?- Yeah, I think Parkinson's is one of these multifaceted disorders and thankfully there's a lot of different approaches that can be taken, but I think probably, the number one thing is to sort of arm yourself with information and try to understand what's going on, what is it, what is the disease, how does it show up? What are the symptoms or the problems that you can have? And try to understand those in the context of the different treatments that are available and how those treatments are intended to help you. And I think, organizations such as yours, as well as the Davis Phinney foundation and a number of other local, as well as national organizations do a really great job of educating their constituents or their members about these types of issues. And I think, starting there and just being a part and listening and trying to kind of hear and understand all of that information is great as well as communicating with your physician about it. And that's what I would say is really kind of the second big thing that I believe strongly in is having a good and strong working relationship with your treating physician. So finding somebody that you can work with somebody who understands the disease, who can answer your questions, will take the time to answer your questions and that you can sort of take those issues to, and have confidence that they're going to be addressed in the way that you need them to. And then of course thirdly, I would say as I think everybody hears is, just taking care of yourself and exercising and making sure that you're taking time to kind of address all the different aspects of this disorder as you can.- Yeah, I love the second one you noted regarding the care provider patient relationship, It's ultimately a true partnership. I'm sure you find that to be true with your patients.- Yeah, and I think it's also one of the most rewarding parts of doing this work, which is that you get to have those sort of ongoing long-term relationships with patients. And I think we sort of see how things evolve. We know that Parkinson's affects not just the patient, but also, the environment around them and other family members and things like that. So we've really have gotten to know a lot of my patients fairly well over the years and it's nice to see that we can have that kind of a working relationship and nice to see the sort of results of that when it works well and people, get the results that we're looking for.- Yeah, well moving on working in the neurological disease space can certainly be tough sometimes to the inevitable decline of the patient. Tell me what keeps you optimistic and enthusiastic working in this space?- Yeah, I thought a little bit about that question when I saw it on your list of things that you wanted to talk about today. And I'll maybe start by just relating a story. Like I have two little stories to tell you. One was just a recent patient that I saw and he, we actually did the visit by video. He didn't even come into my office, but it was very clear on this evaluation that he had Parkinson's disease and it was absolutely necessary for him to start medication. And we did that and I think some of his other physicians maybe have been hesitant to really kind of solidify that diagnosis or start the treatment for him, yet he was quite impaired and the simplest thing, which was just understanding what was going on, having that conversation, knowing what questions to ask, starting him on Levodopa. And then a month later we had our followup video visit and he was so grateful and it was so, just amazing to see the smile on his face. It was a completely sort of transformed person. And that's why we do this, right? Because we know that there's things like that that can make an absolute difference in patient's lives. And he and his wife were both extremely sort of grateful for having had, the opportunity to go through that evaluation and start the treatment and kind of make progress. And so that's one reason, the other I'll tell you is kind of similar. I in my training of course, as most movement disorder specialists, we get exposed to deep brain stimulation and it was just that first patient that's all it took was that first patient to really sort of see the transformation that people can have when it's obviously the right patient at the right time. And all of those things that again just being able to make such an obvious difference in such a short amount of time, by really just taking the time to pay attention and implement the appropriate therapies for them.- Yeah, that's fantastic. Your first story kind of dovetails into my next question which is fantastic. Needless to say, Parkinson's is a diagnosis that takes time to navigate, but ultimately leads to positive outcomes through therapy and medication. But tell me what advice you would give to folks who are newly diagnosed with the disease?- Yeah, I think it maybe goes back a little bit to, sort of what I was saying earlier, when you're newly diagnosed I completely understand you sort of see the look of fear that some people may have, or just maybe frank devastation, because they're worried. I mean, I think one piece of advice that I often give my patients is not to think about Parkinson's as the disease they may have understood or heard about years ago, because vast differences these days in terms of our understanding of the disorder and the approach to the treatment. And so it's not really your grandfather's Parkinson's anymore. It's really sort of a new kind of phase in terms of how we approach it. And I think that therapeutic landscape is definitely beneficial for patients. And it's constantly evolving in the sense that there are a lot of good research efforts going on trying to find new therapeutics and trying to find ways to sort of slow that ultimate progression. And although the progress of science may seem slow, the fact that there is a lot of science going on and people trying to figure out ways to do this, that is I think very reassuring and very promising. And hopefully it's something that people can kind of attach on to as kind of a symbol of hope that it's a manageable condition.- Yeah, and I love I'm hoping the takeaway of this entire discussion is it's not your grandfather's Parkinson's, I've never heard that and that's a fantastic quote, because it's not. And in your 20 years that you had discussed its evolved immensely. So I think that's such a great quote to take away. So thank you for putting it in that realm. So similarly, similar to the question, what advice would you give to those folks, who've had the disease 10, 15, 20 years cause sometimes therapy becomes stagnant, motivations become stagnant. So what advice would you give to that population?- Yeah, I think, it is a challenging disease, right? I mean, although we have treatment options and we can approach it, in different ways as I was talking about. I mean there are inevitably changes and differences that people are going to experience over that time period. And I think, that is also something that requires a good understanding of, so you of have a frame of reference for why certain things might be happening. And again, that requires a good relationship with your physician, also incorporates just making sure that you continue to try to read about what it is that's out there, or hear about it or participate in any kind of educational program. So you can hear kind of what is sort of the latest and the greatest and the newest things that are going on so that you can maintain that sort of level of hope of eventually, being able to handle this and kind of attack it in a much more sort of aggressive way I guess, than what we're used to doing. But there's always ways to help. So I think having that conversation, seeking the care, identifying what the issues are, and really just kind of doing your best to take it by the horns and doing something about it. I think those are really the best tools.- Yeah, communication is key.- Yeah.- Understanding what's going on and communicating it and then trying to figure out a solution.- Yep.- That's great. Tell me, we've talked about Parkinson's and it's not your grandfather's Parkinson's. It's often synonymous, the folks who don't know a lot about the disease, it's often synonymous with the tremor, but there's so many facets and intricacies of the disease. If you could shine a light on one symptom, a lesser known symptom just to share with the world, what would it be?- Yeah, so I thought about how I would answer that. And I think one of the projects that I did sort of early in my career, we were working with my Central Georgia's as well as at Baylor college of medicine. And there was sort of an observation that was made that patients with Parkinson's might like actually crave sweets. And so what is that about, right? So craving sweets, we don't often think about that as a symptom of Parkinson's disease, right? I mean, we think about the movement problems and yes there's greater understanding of a non-motor symptom but then what is this thing? And so we started asking patients about it and I don't remember the specific numbers of it, but if you ask, you will find that a lot of patients just sort of have that sweet tooth and it kind of changes and develops alongside the Parkinson's disease and what we ended up kind of relating it to is that it might sort of be similar in some ways to what we otherwise recognize as impulse control problems in Parkinson's. So people who might have excessive shopping or excessive computer use, or binge eating, things like that, and it maybe falls into a similar kind of category. But if you ask and you ask enough, Parkinson's patients you'll find out that, a lot of them have a pretty good sweet tooth.- How interesting. Now, if I can delve deeper, maybe a follow up question on that, is that because of the lower dopamine levels and the impulsivity, trying to almost create that feeling in.- I mean, it's probably more complex than simply--- I'm probably simplifying it.- No I didn't mean it that way. But I think I'm just as we age, right? So our taste buds change, our sense of smell might change in certain ways. And then we know on top of that with Parkinson's you can lose your sense of smell. So then there might be in some ways, a sort of compensatory mechanism to try to still get that sort of stimulation, but then there is also kind of the reward seeking aspect of Parkinson's or changes in the award seeking that may relate even to the medications that patients are taking. And so while we didn't get to really understand all the specific underpinnings of that, I do agree with you. It probably does have a lot to do with the dopamine changes that are going on in the brain.- Yeah, it truly is fascinating. We have not heard that answer before, so it's definitely a unique one. So thank you for sharing that. Now kind of a similar question, if you could wave a magic wand, now perhaps this is in the form of a grant, a research study that you ultimately uncover this fantastic cure for a specific symptom. What symptom would you like to tackle and wave that wand and solve?- Wow, that's a tough one. I mean, I think there are many symptoms that we would like to have a better handle on than we currently do. But I think the one that I don't know in my mind that seems relatively elusive is this question of fatigue. And I think, a lot of patients sort of have that complaint and it's, we kind of go down our mental checklist of what are the things that can contribute to fatigue. Is it a thyroid problem, is it a vitamin deficiency? Are you not sleeping well, is it from your medications? Is it any number of different things that we try to consider? And yet there doesn't seem to be that one sort of clear explanation in all patients. So if I had a magic wand to wave, it would be to figure that one out.- Yeah- And try to help that problem, because I think, we currently have fewer options in terms of managing it because there's so many different aspects to it, I think.- And it bleeds into every other aspect, right? Of their care, so that's great. Thank you. Now as you know, there's so much Parkinson's research going on all around the world from therapeutic strategies to surgical procedures, what's something or a research project or category that you're particularly excited about?- So in my main clinical and research focus is actually in deep brain stimulation. So I really like a lot of things that are related to DBS. First, it's a great therapy for the right patient at the right time. And we can see some really great amounts of symptom control, which of course is satisfying for all around, for everybody I think, right? But some of the things that I think are really exciting in the field of DBS right now relate to some of the new technology that we have available. And the fact that in this also kind of parallel some of the research that I did and then continue to do, which is related to the brain signals. And so now with the deep brain stimulator devices, we can actually record what's going on in the brain and kind of understand a little bit more about, how or why the symptoms are kind of showing up and how they might be changing over time in relationship to medications, and also changing in relationship to the stimulation that is being provided. And so this new sort of capability to do that in patients who are sort of chronically implanted with these devices is really amazing, because we can really use that as a tool to understand a lot more about the disease and to study it in different ways. And then also to study, if we make a change, how does that impact, what these brain signals are? And are we really kind of solving a problem in kind of the right way or with the right markers and things like that. So I think that has been one of the most sort of really exciting things for me personally, just because we've been looking at those brain signals for a while now and how they relate to different signals. And now we can actually even envision a scenario and some of this clinical trials work has already starting where you can use those brain signals to actually control the way the stimulation is being delivered, so that you really can more specifically individualize the deep brain stimulation therapy for patients. So that's super exciting.- Yeah, that's fascinating. Now with your specialty in DBS, where would you like to see the procedure in five to 10 years?- Yeah I think there's a lot of stuff going on, whether it's techniques like surgical techniques in terms of getting the electrode into the best place possible. Whether it is learning more about how we program and understanding how to manage different side-effects or having even new technologies available to sort of optimize all of those things. But I think in a perfect world, we would be able to just get that electrode into the best spot possible for that individual patient. And I think we're learning more and more about sort of this individuality and how to really kind of be addressing the specific needs of that specific patient. And I think I would love to see that kind of evolve in the next five to 10 years. So that we can just be a little bit more, maybe take some of that residual guesswork out of, or trial and error work out of the way that we currently approach deep brain stimulation.- Okay, Thank you so much. And it's so true. What you noted in terms of Parkinson's as a whole, how individualized care, whether it's DBS or just as a whole treating the person as such an individual process.- Yeah, I mean even from just medications or what specific recommendations we make for a patient at the end of an office visit, it very much depends on what's going on with that individual. And so you have to, you can't do this with a cookie cutter or whatever.- Yeah, well and it's an exciting time for people with Parkinson's because physicians recognize that, but there's not one size fits all. Visualize, and we hear you and we understand that yours looks like this and your snowflake over here looks different, kind of facilitate in bend and be flexible with our care and the resources we have, so it's exciting in a positive way.- Yeah, I think it consists a lot of opportunities.- So Joohi, we've learned a lot about your goals for the neurological space, DBS and extracted all of your knowledge, in a 15 minute, 20 minute timeframe. So share with our listeners a little bit about what you do for fun when you're stepping away from the neurological world.- So I have a wonderful family, a husband, two children. My kids are nine and 12, so I love spending time with them especially on the weekends, cause the weeks are pretty hectic with school and work and all of that kind of stuff. So any kind of opportunity we can get to go and kind of hang out anywhere, just spend time together is certainly something I look forward to on a regular basis. But I think at my heart, I'm also a beach girl. I enjoy going to the beach. And my kids love it too. So, we will be readily ready to pack our bags anytime there's an opportunity for a beach vacation. I love nothing more than just sitting in the sand and just, relaxing and napping and enjoying the sounds.- That's great. Thank you so much for sharing a little bit more about yourself. I think it's always fun to hear the physicians outside of their world and get to know them in that way. So thank you for sharing that.- Yeah, no problem. Thank you.- We have completed all of my questions, Joohi. I wanted to tell our listeners before we let everybody go, that Joohi will actually be one of our experts on our November 9th round table webinar. We'll be talking about another controversies in Parkinson series, DBS sooner or later, whether we should pursue the procedure sooner in the course of our disease or later. Again, that's November 9th at 3:00 PM Eastern standard time. And of course the details are on our website poweroverpd.org. And we'll start communicating that within the couple of weeks preceding the webinars. So Joohi thank you for your time today as well as the upcoming webinar in November. We truly appreciate it.- Yeah, thank you Margaret, for inviting me enjoyed speaking with you today. And I look forward to having some more conversations during the webinar in the future.- Definitely, thank you.- Great.(soft music)