Parkinson's disease: latest treatments

Transcript

:00 good morning welcome to another online educational event brought to you by Parkinson's Community Los Angeles today 0:06 we are talking about the latest in Parkinson's treatments with movement disorder Specialists Dr Melita Petrosian 0:13 I'm Patrick losasso president of pcla's board of directors for those of you who don't know us we are a Los angeles-based 0:20 501c3 non-profit that supports families living with Parkinson's disease through 0:25 free online education events support groups information and resources our 0:30 annual living artistically art show and so much more today's let's talk Parkinson's program is brought to you by 0:37 our wonderful sponsors Abbott ABV Boston Scientific Medtronic and supernus our 0:44 mission also relies heavily on your donation so if you value the work we do and want to help us continue please 0:50 visit pcla.org click the Donate button with a little red heart in it and make your tax deductible donation today it's 0:57 so easy and thank you uh on to our presentation a few quick notes before we 1:03 start we are recording today's event for our YouTube channel so those that can't attend today will also benefit from this 1:09 presentation if you don't want your image recorded please turn off your video we will remain muted to keep 1:15 background noise at a minimum if you have questions submit them into the chat feature at any time and I'll read them 1:22 during our q a at the end we are so fortunate to have this presenter for you today returning to pcla's let's talk 1:29 Parkinson's series is the wonderful Dr Melita Petrosian Dr Petrosian is a fellowship-trained neurologist and 1:36 movement disorder specialist and director of the Pacific movement disorder Center at Providence St John's 1:43 and Providence Little Company of Mary Medical Center Torrance her clinical interests and expertise are in movement 1:50 disorders as well as Parkinson's related conditions Molita treats movement disorders with a 1:56 multi-disciplinary approach utilizing the latest techniques for diagnosis and treatment she encourages the integration 2:02 of therapists for physical occupational speech and other evidence-based approaches to improve outcomes in 2:09 treatment of motor and non-motor symptoms she is a member of the American Academy of Neurology and movement 2:15 disorder Society please join me in welcoming Dr Melita Petrosian 2:20 thank you for that warm welcome Patrick I really want to give you and your team 2:25 kudos for the wonderful event you had earlier this month I was blown away by 2:31 the art that was presented and and more so I was just thought it was just a 2:37 wonderful way for people to get together and talk about art and not talk about Parkinson's you know um it was it was 2:43 really a wonderful way of getting people together and I really want to commend you and your team I want to let the audience today know 2:50 that today's talk is a little bit different um than what I usually give 2:56 um I did want to touch on some of the most recent stuff but obviously you kind of have to start from the background a 3:02 little bit so um some of the kind of information might get a little bit into the weeds some 3:09 things might be a little bit basic but I wanted it to be a fairly brief talk 3:15 which I always promise and can never seem to deliver on because I wanted a little bit more focus on the Q a than I 3:21 normally have time for so hopefully this will just be almost like a a jumping off point or an Inspiration Point for you 3:29 know a lively q a session oh what's going on here why did that not 3:36 Advance let's see I'll just use my hmm there we go so to click more 3:41 deliberately I guess okay so you know just to start with um I think most 3:46 people on the call are aware that a lot of Parkins and symptoms but not all of course are related to low dopamine in 3:54 the brain and so a lot of our treatments thus far have been focused on uh 4:01 boosting dopamine in the brain so I just wanted to sort of give people a sense of 4:06 where is that in the brain and what is happening when we're using these medications to then be able to have a 4:13 better sense of when we talk about what's new in Parkinson's what is it that where why is it that we're using 4:19 these medications so um one of the uh obviously Mainstays of 4:26 uh treating Parkinson's is levodopa which which gets converted in the brain into dopamine but in order for it to get 4:33 into the brain it's taken with um a dual medication that reduces the 4:39 breakdown of the levodopa outside of the brain gets more of it into the brain and that's called carbideopa so sometimes 4:46 we'll use the term carbide levodopa El dova levodopa cinnamate all of that is 4:52 equivalent um the dopamine then gets taken up by dopamine receptors and so there are 5:00 medications that can also work on dopamine receptors separately and those are called dopamine agonists and those 5:06 include primiplexal ropinarole rotigatine which is the new Pro patch and apomorphine and 5:13 then dopamine gets broken down into its metabolites and so there are medications that reduce the breakdown of those 5:20 medications um which include resange and safinamide 5:26 medications that break down reduce the breakdown of levodopa including in tacopone and a picapone 5:33 so as uh the years go by a lot of people with Parkinson's but not all will 5:40 experience what we call off time and what that refers to is 5:45 um a switch from the medications kind of acting smoothly over the course of the 5:50 day with the um you know amount of the brain's natural dopamine being enough to cover 5:59 the symptom management while um as the medication wears off so 6:06 um in the sort of first several years of the condition the medication may not be 6:12 felt as kicking in or wearing off necessarily by the patient they may sort 6:18 of feel like most of the time they're in this sort of good zone now please bear in mind that this is obviously vastly 6:25 oversimplified just for sort of the purposes of kind of having a way of envisioning what's happening 6:31 um but the theory behind it is that patients whose medication has worn off 6:38 they feel low dopamine off meaning slow 6:43 stiff stuck shuffling and then if the 6:48 medication is too much theoretically too much levodopa they might experience dyskinesias now 6:56 again this isn't nearly the full picture of exactly how dyskinesias occur not 7:01 everybody gets dyskinesias but there are some people who will sort of cycle between on that right side of the uh 7:09 chart of the slide either feeling off or on with dyskinesias with not enough time 7:17 spent in the well-controlled sort of blue bar so a lot of the new medications that 7:24 have been approved for I I should say 10 I just realized I added one last night and I 7:30 um didn't uh update the top part of my slide sorry about that um there are 10 quote unquote new 7:37 medications for motor symptoms since 2014. although the top one and the bottom one on the list are carbideopa 7:44 levodopa just in different formulations so many people are familiar with writari as being an extended release form of 7:52 carbide levodopa it can last longer than immediate release carpetable levodopa 7:57 some people may not be aware of Divi which is the one on the bottom there it is again just carbideopa it is an 8:05 immediate release form honestly it's really not that different it's the only reason why it's new is because it's a 8:12 it's easier to break into smaller pieces so most of my patients if they're if 8:17 they have to take like a half tablet of the carbide open levodopa it's not too 8:22 hard to make that a fairly even split but if somebody's very very sensitive to 8:27 going a little bit smaller a little bit bigger in in the split of their pill 8:33 Divi is available in a much cleaner break to cut it in half or even to cut 8:38 it into quarters um so that's the sort of new it's not really new it's the same old thing but 8:45 in a new formulation another uh levodopa based medication on that list is duopa 8:53 which is a pump that infuses levodopa directly carbide but directly into the 9:02 um intestinal tract so that people who are having difficulty with the oral 9:08 medication as they're taking it their levels are going up and down and up and down this instead will provide a 9:14 continuous infusion over the course of the day so that it's not going up and down another 9:21 of the medications that is levodopa based is imbrisia which is an inhaled 9:27 form of levodopa and that one is levodopa alone it only works as a 9:34 um a rescue I like to call it or a bridge for people whose uh dose has worn 9:41 off before they're due for their next dose um the other medications on that list 9:46 include an maob inhibitor that's the one that helps break down the 9:51 um development excuse me the um helps stop the breakdown of dopamine that 9:57 one's called zidago it's it's fairly similar to the other maob Inhibitors and it's it's somewhat mild in its efficacy 10:04 um and then we have two quote-unquote new medications um go covering osmolex that are 10:10 different from the ones I showed on the other side they're called amantidine which is a different 10:18 um way of regulating dopamine release in the brain and can both reduce off time 10:24 and reduce dyskinesias which are the issues that we get if we're giving too much levodope of 10:31 one form or another um and the final two uh excuse me three 10:36 medications that are newer are neurons which works by 10:42 um uh actually a completely different mechanism instead of 10:47 um giving more dopamine the way neurians works is by reducing the brain's stop 10:55 signaling so we can think of the brain as having ghost signaling and stop 11:00 signaling and the neurians works by limiting the stop signal in the brain so 11:08 it it can really boost the efficacy of levodopa can Moby is a dopamine Agonist that is 11:16 used as a rescue by being absorbed under the tongue only 11:22 um works very short periods of time so it only works as an as needed medication and then ongentis is a newer type of 11:30 comt inhibitor so it works by reducing the breakdown of levodopa and it is 11:38 effective it is it was compared against the older medication in that class which 11:43 is called in tacopone or Compton and that one is the angentus is more effective than the antacopone in that 11:51 study so I didn't want to spend too much time on this because 11:56 um I wanted to again like I said give a little bit more time for questions and sort of give a sense of like this is the 12:03 progress that has been made um so there's definitely been a lot of 12:08 people who have had improvements in their quality of life with these new medications but we're still only talking 12:15 about motor symptoms and we're still not this isn't talking about well how are we 12:21 stopping the progression of the condition um but there's also some really interesting work that's being done on 12:28 well how do we know when we're off you know a lot of my patients will ask me like what does that mean off what is it 12:34 that you're referring to and how do I know when I'm off and um also people will obviously not 12:42 necessarily remember the full details of like how many hours are they on versus off and how long does each medication 12:48 last and so in order to kind of um supplement the information that patients 12:55 can remember to tell us or sort of their feeling of it there are a couple of 13:00 newer ways of assessing motor fluctuations so again just as a reminder of what does on mean what does off mean 13:07 so on means the medications working the slowness stiffness and Tremor is as low 13:15 as it is going to get with that dose and people are generally feeling okay 13:20 people can be on but be struggling with say a non-motor symptom of Parkinson's 13:26 like fatigue or constipation or insomnia so on doesn't mean all of the symptoms 13:33 have gone away it's just that really kind of narrow view of the motor 13:38 symptoms off is where again the medication has worn off let's say they forgot to take it it they took it and 13:45 they it were off too quickly or as after they took the medication it took a while 13:51 before it came kicked in or sometimes people will say you know I just don't didn't feel it kicked in at all and 13:58 um so those are the terms and then it's a little bit hard to read I'm sorry for the smallness of it but traditionally in 14:04 research setting the way that we would ask people about off timer sort of ascertain their off time would be with 14:10 this formal motor diary called the Hauser diary and um we would ask people 14:15 to check off for every 30 minute interval whether in that 30 minute interval they were mostly on mostly off 14:24 asleep or on with Troublesome dyskinesias and again this kinesias are 14:30 involuntary movements they can include head movements hand movements 14:36 um legs um trunk but dyskinesis do not include Tremor so Tremor is that sort of 14:43 rhythmic activity that's um from the disease and dyskinesias are induced from 14:49 the levodopa so as you can imagine it's really hard for people to figure out within a half 14:56 an hour what was I doing especially if they're not doing it in real time it can get really messy so the newer kind of 15:04 ways of looking at what are people's motor fluctuations include the Parkinson's kinetograph or PKG which is 15:13 um from the company Global kinetics and people wear the watch and then after 15:19 they after about a week they put the watch to charge and then they get a um a 15:26 report transmitted electronically to their physician and this on the right is 15:31 what the report looks like where um they they can report on Tremor dyskinesia 15:38 meaning involuntary movements and bradykinesia meaning slowness or stiffness 15:43 um so in this particular example the red lines denote when they're due to take 15:49 their medication it gets like programmed into the watch and the watch will give the patient a reminder and you need to 15:56 take your medications at 6 11 um four 16:02 and nine pm and um the patient on the bottom in these 16:08 little red dots that's when they acknowledge that they took their medication so maybe they took their 16:14 medication an hour late two hours late maybe they forgot they have to swipe the 16:19 watch to acknowledge that they've taken the medication and then you can see this 16:25 pattern emerging here this is a very classic traditional pattern where you know after they take the medication 16:31 their motor scores meaning their slowness their bradykinesia improves to the green zone that's where you want to 16:38 be using the green zone um for a couple of hours but then it wears off again then they take the 16:44 medication again it improved again wears off again Etc sort of that cyclical on and off kind of experience but at the 16:50 same time in the top part here this Orange um 16:55 colored part of the graph the lines shows a dyskinesia so they're getting 17:01 involuntary movements peaking around the same time that their medications are on 17:07 this is a very classic pattern of course it's certainly not the case for everybody and some people whose 17:13 dyskinesis manifest in their jaw or in their foot it may not really show up because the watch is really only worn on 17:19 the wrist um similarly if somebody has Tremor only in the foot it really isn't going to 17:24 show up but it does a very good job of kind of being an adjunct to the person's 17:31 kind of experience of you know I'm feeling on or off over the course of the day and it can be linked to okay well 17:37 this is the time you took your meds and this is what it looks like when you're taking your meds and if nothing else I've certainly found people find that 17:43 when they're wearing the watch they they do take their meds more consistently on time another more recent development for 17:52 evaluation for motor fluctuations is called the strive app which goes on an 17:57 Apple Watch and so this wouldn't be a separate device that is only worn for 18:03 the purposes of the Parkinson's this is a regular Apple watch that has all of the functions of an Apple Watch but the 18:10 app takes use of the information from the kinetics and accelerometry of the 18:18 Apple watch to as well as like heart rate and things like that to give a report that can be accessed at any time 18:26 this is a little bit of a busy slide to see and obviously this isn't a particular patient this is their um kind 18:33 of stock uh you know Jane Doe as it were they have a name but it's not a real 18:38 name um and so this one doesn't detect or 18:44 report bradykinesia it detects and reports Tremor and dyskinesia Asia Only 18:49 sleep the person marks in their app when they've taken their medications and they 18:56 can also Mark how they're feeling and how they've exercised and things like that if somebody has Medtronic deep 19:03 brain stimulation which we will talk about later those brain sense signals 19:08 can also be incorporated into the app and provide real time excuse me provide 19:15 data for the clinician to say okay this is what your brain signals are sending us this is what the Tremor looks like or 19:22 the dyskinesia looks like and sort of to help guide you know what that will look 19:27 like as far as managing the DBS obviously you know people don't need to have had DBS in order to utilize this 19:34 app and um in fact the company doesn't require you to have an Apple Watch they will 19:42 send you an Apple Watch if you sign up for using it so I think what I like about this is that for a lot of people 19:49 who do I have a lot of patients who are in apple watch and I find that you know it it feels less medical you know it's 19:55 like oh I have an Apple Watch and it doesn't have to kind of broadcast that I've got Parkinson's not that the PKG 20:01 says anything about Parkinson's on it obviously it's it's it's a um in development in terms of nicer looking 20:07 um prototypes of it um but the Apple watch can also be used for you know tracking 20:14 the exercise and fitness and sleep and oxygen levels and heart rate and for 20:20 some people um EKG so I think it's nice to actually have everything all in one place 20:27 um so we'll talk briefly about DBS for Parkinson's again this is really a much 20:32 shorter supposed to be a shorter talk so that um we have more time for questions 20:37 but um I I wanted to remind people that DBS 20:43 is a pacemaker for the brain it allows the efficacy of the medication to last longer during the day for some patients 20:50 who have trouble tolerating um levodopa and other medications for Parkinson's we have actually sometimes 20:56 used the DBS as a substitute for levodopa um but certainly the the traditional 21:03 concept would be if somebody's not has tried leave it open they didn't do they 21:08 didn't actually respond to it um they're not going to be a great candidate for DBS 21:14 um it's really for people who's who are experiencing off time and dyskinesias 21:19 and all those meds that I mentioned that I've come through in the last decade aren't working well for them and they 21:24 need a surgical approach it also works well for essential tremor and tremor 21:30 from Parkinson's um that is to say if somebody's medications just aren't cutting it for 21:36 the Tremor that the DBS can be very helpful for that um the the recent advances in DBS for 21:42 Parkinson's include that it is now MRI safe um 21:47 and it's not just Medtronic that is MRI safe that's um Boston as well as Avid I believe have 21:54 MRI safe DBS platforms um the three the fact that Avid and boss 22:01 and subsequently Boston Scientific started to get into the market about six seven years ago has really ramped up the 22:09 the you know the advances that have been made because DBS was very static for a couple of decades until there was some 22:15 competition and so finally there's have been advances made in the technology there's now the ability to record brain 22:22 activity um Abbott's device has um uh Bluetooth 22:28 um programming so it is now able to be programmed like through telemedicine 22:35 which is a really important thing if somebody's living very far from a DBS Center Boston Scientific has a very 22:44 unique kind of control of the simulation where it can be nuanced in a different 22:50 way in terms of where to angle the stimulation Boston Scientific and Medtronic have newer ways of showing the 22:58 within the scan the programmer how and where the stimulation is is hitting in 23:06 the Imaging of the person's brain so that's a really cool kind of way of of controlling the stimulation better 23:15 um also I think advances that have been made are the rechargeable batteries and you know batteries lasting longer and 23:21 and that kind of thing so really some really interesting advances there um the the devices have gotten smaller 23:27 and the wires have gotten thinner so they're becoming more comfortable for people to wear so just more specifics 23:33 about brain sense which is a way of getting information from the brain on 23:39 what are um the what are called local field potentials we call it the beta 23:45 band which correlates with symptoms of slowness and stiffness and 23:50 um it can really line up well with what's happening with the medication and what's happening with stimulation so it 23:57 actually helps us program in a more direct way 24:03 um this is what the screen will look like the the per the patient will can actually Mark in their app oh I was 24:11 feeling on I was feeling off or I was exercising or at dyskinesias and then we can sort of link that to what's 24:16 happening in the brain like what the brain signals are um again the on the right is an example 24:21 of being able to sort of visualize in a 3D way where where Pro where we're 24:27 programming within the actual images of the brain which is again also available 24:33 through Boston Scientific um and I think it's a really a quite a boon to programming in a more 24:39 anatomically um Accurate Way what we're expecting next is not 24:45 available yet but what we're expecting next for DBS now that we have ability to not just stimulate the brain but also to 24:53 um pick up the signals coming from the brain is that the brain will then excuse 25:00 me the DBS won't just give the stimulation continuously but rather will 25:06 only give stimulation when certain parameters are present and so it'll 25:12 actually turn the stimulation on and off in a way that is um ideally not felt by the patient but 25:20 but rather as resulting in the battery being less used less over stimulation 25:26 and you know essentially only using it as needed rather than a continuously on 25:32 State so we call that adaptive DBS so that's not available just yet but I think it 25:38 will likely be available very soon another sort of newer treatment for 25:44 focused ultrasound um this did get FDA approved in 2018 for 25:50 Tremor predominant and then 2021 brought the approval for dyskinesias and 25:56 Parkinson's so this is called focused ultrasound which is I think a lot of people have heard about this um it's a 26:04 way of delivering about a thousand beams of ultrasound to the brain and using 26:11 those beams to actually heat a very tiny part of the brain to 26:17 um calm down or like actually to create a lesion and to silence that overactive part of the brain so in a way this is a 26:25 new technology that Harkens back to an older way of surgically treating Parkinson's which was way back in the 26:32 day the the surgeons used to actually create lesions directly in the brain then DBS came about and and that kind of 26:39 fell out of favor and now we're sort of come full Circle to putting a lesion in the brain but instead of doing surgery 26:45 to do that they're using a um non-incisional approach I don't like 26:51 calling focused ultrasound non-invasive because it is a brain procedure you are 26:56 putting a lesion in the brain so I I don't like that term non-invasive but I 27:01 will say it's non-incisional for Tremor predominant there's a 27:06 particular Target that's used it can only be done unilaterally for now although that might change in the future 27:12 and they did show 62 percent Improvement in Tremor compared to 22 in the Sham 27:19 group and then in 2021 the FDA approved focused ultrasound for a different 27:24 Target in the brain called the Globus pallidus and they showed 50 Improvement in in dyskinesias and motor scores with 27:31 that um people always ask me about Focus ultrasound and I say well what are you 27:36 referring to because there's high intensity and there's low intensity and those those are two separate things high 27:44 intensity is creating a lesion it's a permanent lesion it is a kind of a one 27:49 and done there's no ST there's no programming that's needed there's no 27:55 um adjustments that are needed but conversely there's no ability to adjust it it's it's uh um once the treatment is 28:03 done it's done this other treatment this low intensity Focus ultrasound is entirely 28:08 experimental it is not a it's nothing that has been approved or even proven to 28:14 work but people are asking about it because UCLA sending out some emails regarding a clinical trial that they're 28:20 enrolling that I think is really promising but it's a very different kind of concept the idea is that with the low 28:26 intensity Focus ultrasound you're not creating a lesion you're not doing anything permanent you're not cause you 28:33 you know that one will truly be non-invasive but at the same time it 28:38 isn't if there are benefits from it they would not be permanent so there there is a clinical trial that's enrolling for 28:44 that so obviously you guys know we are well most of you who know me know that I 28:51 can't not talk about exercise so um this is new information about what we 28:57 always knew it sort of new confirmation um this clinical trial came out excuse 29:03 me uh this study came out in um uh 20 earlier this year 29:09 um and what it showed was that um when we followed people I shouldn't 29:15 say we I wasn't part of the study but when they followed people for a close to five years 29:21 um they found that those who were exercising were associated with a slower 29:27 deterioration of their walking their postural stability their activities of 29:34 daily living and their cognitive processing speed um the exercise that was most associated 29:41 with improve um with um you know better outcomes at five years were moderous to moderate to 29:48 vigorous exercise so thinking like high intensity cardio or progressive 29:53 resistance exercises um whereas when people were doing work related activities so for example if 30:01 somebody is you know working as a 30:06 um you know working as a waitress it's a very physical job they're they're moving a lot they're not sedentary by any means 30:12 but it's not exercise per se so work related activities um didn't show as much benefit but was 30:19 associated with a slower decline in processing speed and then household activities like laundry and vacuuming 30:26 and doing the dishes again not sedentary but not the same as exercise was 30:31 associated with just a slower decline in the activities of daily living but didn't have all the benefits of moderate 30:38 to vigorous exercise so again just proof of what we always told people it 30:43 actually makes a difference in your outcome and these were people where you 30:48 know they're they were sort of at the same Baseline kind of coming in as far as how much exercise they were doing or 30:55 how how fit they were to start with so the concept is that their their exercise 31:02 um was associated with what they looked like in five years time 31:08 um just briefly wanted to let people know because the question is what's new so there have been some clinical trial 31:14 updates some things that are still enrolling um the um there's you know medications 31:20 that are being assessed for managing constipation in Parkinson's um there are medications being tried for 31:29 a particular Gene called lark2 which when it's over active contributes to 31:36 Parkinson's um so this is a lark II inhibitor and they're testing it for people who do and 31:43 who do not have lark2 abnormalities in people with Parkinson's um that's going 31:50 to sort of the news is that it's starting to enroll um I don't I didn't see any local sites 31:56 yet but it likely will have some local sites so you can check into 32:01 clinicaltrials.gov to find out more about that um the tyrosine kindness inhibitor 32:08 um that is from the company spark is going to be enrolling for a phase two 32:14 for early stage Parkinson's disease and we will be a site for that 32:19 um and um there was some also really interesting in vitro data about how 32:26 lark2 plays a role in Parkinson's so they actually developed something called a nano body 32:32 so this is like a kind of like a um not just microscopic but a tinier 32:39 version of an antibody that they actually derived from llamas which is really fascinating and they showed that 32:45 they were able to inhibit larv2 and vitro and they're they believe that it's going to work differently from how the 32:52 more traditional antibodies were working so again the concept is that there's 32:58 really a lot of people who are putting a lot of effort into thinking about really novel 33:04 ways of approaching that you know what we're talking about with Lark 2 and with the tyrosine kinase inhibitor and what 33:11 we're talking about with the glp-1 receptor agonists the loraglutide study all of that is trying to figure out well 33:17 what everybody wants to know is how are you going to stop this disease how are you going to prevent it from progressing 33:24 you know is there a point where there can be a cure and so that is this kind 33:30 of work it's not it's different from talking about oh these these are the medications we're using now these are their new medications we have all of 33:36 that is about managing symptoms this is the other side of the coin is well how do we actually slow progression we know 33:43 for sure that exercise as I mentioned before and diet um are associated with slowing 33:49 progression of Parkinson's so that's really key to keep doing but we're still working hard on finding more than just 33:56 that so the loraclotide study a lot of people were asking me about that it did show 34:02 the Improvement in non-motor symptoms activities of daily living and quality 34:07 of life so that is going to go on to other studies to see how it and Other 34:13 Drugs in its class do for preventing progression of Parkinson's and then there's been some you know more 34:20 you know smaller kind of the beginnings of things looking for how are people going to do with 34:26 um a completely novel way of breaking apart the alpha synuclein that clumps 34:33 together and contributes to the cell death in people with Parkinson's so that was just a very beginning beginning 34:39 study um and then I wanted to finish with 34:45 something that was very new to me um and there was a study in in again 34:50 earlier this year that I was really Blown Away by and you know it's a little bit of a tricky topic but I was 34:59 fascinated by the you know the the concept of this study there is a 35:06 wonderful researcher named basketball he's in like the Netherlands and he's just he's always on the Forefront of not 35:12 just okay well how do we treat Parkinson's like he's helped developed a lot of these newer medications but he's 35:18 also really you know really just approaches it from a completely different angle and so every time he has 35:25 a lecture or a you know a a a paper I'm just fascinated by it and just feels 35:31 like my world has been shifted and so what happened was 35:37 um he had a patient who came to him and asked him well Dr Blom like is there any Silver Lining 35:44 to having Parkinson's and I don't know where that patient was coming from as far as why he asked that question but 35:51 you know Dr blum's initial like gut reaction was like no of course not this is a terrible disease and you know 35:57 people are suffering and you know why would there be a silver lining and then he sort of paused for a moment and sort 36:03 of reflected on it and thought well I'm not really the right person to answer that question really 36:10 um people with Parkinson's should be answering this question so he very kind of loosely and informally did a social 36:17 media kind of exploratory survey if you will and he found that of the people who 36:24 responded which of course is a biased group we can imagine 82 percent of people responded saying that they were 36:31 able to identify at least one positive experience that they had had as a result 36:36 of having Parkinson's and that included a greater appreciation for life a change 36:42 in life philosophy um better healthier lifestyle which I've heard that a lot with my patients they a 36:49 lot of my patients will tell me they feel more fit than before they had Parkinson's some of them felt that they 36:56 um were gaining some personal inner strength and changes in their personal relationships and activities of course 37:03 not everybody felt this way and and people did respond saying that there was absolutely nothing positive and and 37:10 almost being offended by by the the thought that there could be any kind of Silver Lining and you know obviously the 37:16 conclusion is that a silver lining is still part of a cloud when the cloud is is there but I think the concept of you 37:24 know rethinking what we mean to be healthy um this sort of positive health 37:30 definition that came in 2016 is very very different from the original who 37:35 definition of Health which is a state of complete physical mental and social 37:41 well-being which which almost seems unattainable like I'm not sure who I know who fits that definition you know 37:47 it's like is that is that something that is too perfect to be attained to the you 37:53 know to the majority of us and so if we reframe the concept of Health as the 37:58 ability to adapt and to self-manage in the face of social physical and emotional challenges we can say that you 38:06 know quite a large percentage of our Parkinson's patients are healthy 38:11 um and that they are living with Parkinson's um but they're you know that they 38:18 themselves might sort of reframe how they're thinking of themselves and I think that while we don't necessarily 38:23 want want people to go too far into denial because I have seen that I think that there's really a value to sort of 38:30 reframing and sort of reconsidering what we mean by health and what we mean by 38:37 you know what what is a a you know healthy living in the context of having 38:42 a chronic condition so that's a little controversial and you know I apologize if I've offended anybody because as I've 38:48 always said I'm an expert but I'm also an imposter because I haven't walked a day in your shoes so I recognize that it 38:56 may be a little bit too easy for us to say it but again these were respondents with Parkinson's themselves who were 39:02 identifying these kind of positive experiences so I think it's important to have space for that possibility in our 39:09 minds so I just wanted to end on that and open up to questions 39:14 oh thank you so much Dr petrosi and this was absolutely fabulous and I actually 39:19 love the way you you wrap things up with that uh that was a really regardless I 39:26 understand the sensitivity of it but I don't think I've ever heard it looks 39:31 that way be at that way before um so thank you for sharing uh that Dr 39:36 Bloom I guess was his name with us um so we have a lot of great questions here um the theme is the latest in treatment 39:43 so we're going to try to get to all the questions but I'm going to try to um kind of filter them out a little bit 39:48 that and start with the ones that are referencing treatment um what about try hexafenadril Adil 39:57 so trihexofenadyl is uh The Branding for that is artane it's it's not new it's 40:02 been um available for quite some time I actually was used very traditionally for 40:08 Parkinson's before levodova came out because it's what's called an anticholinergic and it's sort of 40:14 indirectly can boost dopamine so we use it sometimes for people who have 40:20 um either Tremor or dystonia whose medic whose symptoms aren't responding to levodopa or who can't tolerate it 40:27 um I tend not to use it in my older patients because it can cause confusion 40:34 um and especially as people get older um so if anybody has any kind of cognitive issues I wouldn't even touch 40:40 it um but um in addition to that it can also cause dry mouth constipation so it 40:47 doesn't have as large of a role but I I certainly have some people where it is helping them 40:53 um especially a younger patient thank you it is not a disease modifying 40:58 treatment so it's just for symptom management okay can you talk about glutathione treatments I have a 41:04 deficiency due to Triple mutation that runs in my family which causes Tremors and bradykinesia that's yes 41:11 very interesting yeah um glutathione is a very um I think interesting uh 41:19 um medication that um I I kind of fear it's sort of been 41:25 stalled in in the development of it because it is available as a supplement so I've had you know I've I've noticed 41:33 that when something is available already to be sold then if there's a reasonable 41:41 kind of concept of why it might work for Parkinson's then there's not really a 41:48 motivation to confirm that it for sure works for Parkinson's because it can 41:53 just be sold without proving it as long as the you know a supplement 41:58 manufacturer isn't claiming that it's treating Parkinson's then they can really sell whatever they want so I I 42:04 have a hard time recommending that everybody with Parkinson's take glutathione obviously 42:09 if somebody has a glutathione deficiency then that's a separate thing but um for the average person 42:16 um I I think that there's some reasonable theory behind it but I I 42:22 can't really recommend it as a wholesale and I think that it really wasn't found to be effective when taken orally and it 42:29 was more the um you know intranasal approaches that were more effective 42:34 thank you I started uh leave it up with Carbidopa a few months ago and seemed to continue to have motor symptoms with it 42:41 but feel better in general when I take it does that make any sense yeah you know unfortunately levodopa 42:48 isn't a you know Perfect Replacement for natural dopamine it it it helps boost it 42:55 but it's not I don't think it's it's hardly ever 100 I I sort of have a very 43:01 tiny subset of patients who tell us you know what I feel like when I'm taking it it's like I don't have Parkinson's and 43:07 that's not common it's more common for people to say oh I definitely feel better I feel like I can function better 43:14 but I still get Tremor when I'm nervous or I get you know stiff when I'm tired 43:19 or more typically you know for me to be able to catch it on the exam for me to be able to see that oh they still have 43:26 parkinsonism on exam it's just better so that's fairly common 43:31 okay there's an amendment to this as well um hi I was diagnosed two years ago at 61 my question is there a way to 43:38 measure the levels of dopamine in a person's system is there an Optimum level in this regard are there norms for 43:45 dopamine levels or does it differ widely among individuals it's a great question that is those are fantastic questions 43:53 um unfortunately there really isn't so blood level you know dopamine in the 43:58 brain levels don't show up in the in the blood it's just not going to show up 44:04 um there's a lot of biomarkers that have been developed for Parkinson's but for 44:09 primarily what they're looking for is does this person have Parkinson's what's happening in the brain so for example 44:15 there is a blood test that is going to be looking for that abnormal Alpha 44:21 synuclei and I alluded to earlier um to kind of try to distinguish is is 44:27 this a person with Parkinson's or not um that one remains to be seen like how 44:32 effective it is as a prospective biomarker a prospectus prospective biomarker a good example would be like 44:37 PSA the you know prostate specific antigen like it's not perfect but if you 44:43 follow it with time especially if somebody has prostate cancer you can say oh they're responding treatment or 44:48 they're not responding to treatment you can monitor something based off of it you don't have to wait for something bad 44:54 to happen like metastases you're monitoring the PSA we don't have that for Parkinson's we don't have a 45:01 prospective way of monitoring how are they doing how are they evolving how is this treatment helping them all we have 45:07 is what do they look like clinically when they're taking the treatment we do have biomarkers that are diagnostic so 45:14 that's the DAT scan which sort of measures dopamine levels in the brain but it's a it's a Gestalt it's sort of 45:21 like is it normal or is it abnormal it doesn't really quantify a level and then we have the sin one biopsy which detects 45:28 Alpha nuclein in its abnormal form in the nerves of the skin but again that is also just a does this person have 45:34 Parkinson's or not um and both of them don't really distinguish between Parkinson's and Lewy 45:40 bodies which is a whole other talk but it's really not actually getting at what are their dopamine levels should they 45:47 take their meds now or should they wait now or you know and that's why I think things like the PKG and the the strive 45:55 PD app I think that's where we're going to be hopefully getting a little bit closer to how can we know if we're 46:03 taking the meds correctly on time up and down and yes there are you know wide levels with individuals but there's not 46:10 Norms because it can't be tested in the blood thank you uh some DBS related questions 46:16 I have a titanium plate in my forearm from a previous surgery in 95. do you 46:21 know if this would preclude getting DBS when using M an MRI and I had my DBS two 46:28 years ago will I be able to have the Adaptive DBS great questions the first 46:34 one no um Titanium is not a problem it's uh it's a non-magnetic metal so that's 46:41 not an issue um the um uh question about adaptive DBS it may 46:52 or may not it really depends on what kind of DBS they had 46:57 um the the platform that seems most close the closest to getting to Adaptive 47:02 DBS is the Medtronic platform and I know that the Medtronic newer 47:07 um impulse implanted pulse generator or or ipg we call it a battery is compatible 47:14 with their old leads so you know nobody's ever going to replace brain leaves when somebody's when new 47:21 technology comes out because the biggest risk of the procedure is the actual placement of the lead so we're not you know nobody's going to take out leads 47:27 put new ones in unless there's something bad like an infection so the question is when the battery gets replaced will it 47:35 be compatible with the leads that that person has and the question is it might but it it really depends 47:42 um on which platform it is and and so it's a good question to to ask their neurologist 47:48 uh are there any new developments with more quote natural unquote treatments 47:53 for example acupuncture great question so so as far as natural treatments for 48:00 Parkinson's as I said before I I think it totally Bears repeating exercise 48:05 exercise exercise um I'll say that five million times diet I think the Mind diet which is the 48:11 Mediterranean intervention for neurodegeneration delay say that five times fast is uh has been associated 48:18 with a slower uh progression of Parkinson's they actually showed that even when people turn to the Mind diet 48:24 late in life like after diagnosis it still was associated with an improved outcome so I have a lot of people who 48:31 say well I'm 80 I'm not going to start eating right now and I'm like you still should it still has you still have time 48:37 to do it um sleep very very important natural treatment for Parkinson's when people 48:43 sleep well sleep hygiene cognitive behavioral therapy for insomnia all these things makes a huge difference not 48:50 only for how they feel but how the disease progresses um you know therapy for 48:56 um depression or anxiety I think of as natural I think think of joy as being 49:02 really important gratitude as being really important so you know the art program that Patrick and his team put 49:09 together dancing music all of these things make changes in the brain that I definitely think make a difference for 49:16 people's outcome social engagement is really really important a lot of times people have struggle with you know low 49:22 motivation low energy like I just don't feel like getting out and doing X Y and Z and obviously some people are are 49:29 worried about covet or whatever but like getting out there seeing people like you 49:35 know being in the world it really makes a difference with how people do and then mindful awareness and meditation have 49:42 also been shown to help for the symptoms of Parkinson's and I personally really really believe that it isn't just that 49:49 all of these things I mentioned make a difference for how you feel tomorrow but rather like what is the progression of 49:55 the disease going to look like so I really encourage people to think about lifestyle style choices acupuncture you 50:02 know maybe I mean I think there's some data that acupuncture can help for stress reduction or improving blood 50:09 pressure if people have high blood pressure and and that's important for brain health for sure um you know I think if it helps people 50:16 sleep you know great but I don't think of it as something specific for Parkinson's so I really don't have a 50:22 problem with people getting acupuncture but I don't think it's like oh everybody needs to be doing acupuncture okay thank 50:28 you uh here's uh from someone with PSP is there a way to diagnose PSP besides 50:34 anecdotally great question PSP unfortunately is a very very difficult situation 50:42 um uh and is it's it um evolves very differently from from 50:47 traditional Parkinson's disease um but one of the most uh 50:54 informative uh diagnostic features is what the eye movements look like on exam 51:00 that is that has consistently been shown to be the most consistent excuse me I 51:06 said consistent twice um the most uh predictive feature of the 51:11 exam but there are also um MRI findings that can be very 51:17 consistent with PSP including midbrain atrophy and 51:23 um there there are newer Imaging modalities like the Tau pet 51:29 um that we might think could be a diagnostic but they really haven't been 51:35 tested consistently enough to be uh sure that that would be diagnostic so so 51:43 so far really it's just the MRI and what the exam looks like and I think we will 51:48 be able to see more with either blood work or maybe even spinal fluid or the 51:54 towel pets but it's it's not clear yet if how could how diagnostic they will be 52:00 how accurate they will be in diagnosis thank you we ought to call this a lightning round there's so many great questions we're just firing away thanks 52:07 for that great answer um my 44 year old son was diagnosed two years ago his main symptom is fatigue 52:13 and brain fog is there an indication of future cognitive decline he has some 52:18 stiffness on one side good question I mean you know unfortunate reality is that cognitive 52:26 decline is common with Parkinson's disease um I should say cognitive changes are 52:31 very common because a lot of people will notice that they're just not thinking exactly the same way they used to but 52:38 that they can still function quite well um but unfortunately 52:44 um um cognitive issues can happen predictors for cognitive decline include 52:50 just really as the disease is progressing and as they get older so a 44 year old is is going to live with 52:56 Parkinson's longer so you know you know when that person is 84 you know yes it's 53:03 very likely that they're going to have some cognitive decline along the way but exactly when would be hard to know and 53:09 then the other kind of predictive factors are um you know if they have a lot of tremor 53:15 they actually have less risk of developing cognitive decline again none of these are absolute these are just 53:21 sort of like what are the risk factors so if somebody has like no Tremor whatsoever they're unfortunately 53:27 especially if they start off with a lot of balance issues that's going to be somebody who's at a higher risk of 53:33 having cognitive decline the brain fog and fatigue I mean those are very common so I don't know that I would necessarily 53:39 immediately think that that's going to be predictive of cognitive decline 53:44 thank you here's a quick one is the Silver Lining questionnaire still available yes I mean he's not doing that 53:52 um that social media aspect of it but um I will find it he he put it in that 53:59 study and I will I will send it to Patrick and he can distribute it 54:05 um I recently had blood work done and my doctor reported back to me that my dopamine level was high based on what 54:12 you just said is that possible I don't know I it's it's not the brain 54:19 what he's measuring is not the brain dopamine level so um that's different like the systemic is 54:25 different from what's actually happening in the micro because there's dopamine that manages our blood pressure in our heart that we call peripheral like not 54:32 in the brain so that's not really relevant to what your what is happening in the brain 54:39 I read about the vaccine ub312 which uh intends to slow or stop PD what are your 54:46 thoughts on that and when might it be available thank you I don't know when it's going to be available I think I'll a lot of these vaccine type treatments 54:54 are very promising um but I I think that one's still like 55:00 in process I don't have specific data on that one I was diagnosed with Parkinson's 11 55:07 years ago and of course it is Progressive why do I have occasions during the day where I 55:13 have short periods of no Tremors also sometimes I sleep smoothly through the 55:18 night and other times I move or jerk throughout the entire night while sleeping that's a very good question 55:25 um bottom line is Oh it's very very common for people to experience 55:31 fluctuations even outside of those like what we call on and off so sometimes 55:37 people will tell like oh I don't have Tremor now because my meds are working or I you know do have Tremor because my 55:44 Med wore off even though I'm not due till you know 12 30 or whatever the case may be sometimes it's unpredictable 55:50 where they like I just feel like this med just never kicked in at all but broader than that almost everybody 55:57 experiences good days and bad days and good moments and bad moments and sometimes we can tell why so for example 56:04 I slept really well I'm in a good mood I you know exercise a day ago you know I'm 56:10 feeling good right now I don't really have much trauma right now and sometimes we have no Rhyme or Reason and that can 56:17 be kind of maddening to people I find that they're like well I don't understand why is it coming and going 56:22 and you know we just see it a lot I think there are natural fluctuations in 56:27 dopamine levels that are available left over in the brain but also you know I I 56:33 believe in the gut brain connection playing a role in how people are feeling you know in terms of how the microbiome 56:41 which is the collection of bacteria in the gut impact how the medications are 56:48 absorbed and how that plays a role so you know the short answer is we don't really know why people fluctuate but 56:54 it's very common thank you incidentally we have a Linda reports 57:00 that she uses acupuncture and it has a wonderful calming effect for her Parkinson's 57:05 um is there a treatment for night terrors it depends on what people are referring 57:12 to with night terrors there's a very specific Parkinson's related night time 57:19 problem called REM sleep behavior disorder which is where the person is 57:24 active while dreaming so kicking punching jumping out of bed feeling like they're getting chased feeling like they 57:30 have to fend off attackers in their dreams very classically their violent 57:36 self-defense dreams and um that happens during REM sleep where 57:41 the body is not paralyzed during REM sleep as it should be yes there's treatment for that first and foremost 57:47 melatonin secondly clonazepam sometimes we have to look at the med list and make 57:52 sure there's not something that's contributing when people use the term night terrors it makes me think they're 57:58 referring to nightmares which is a separate thing um a nightmare doesn't simply happen 58:03 during REM sleep and um you know has other kind of emotional 58:09 attachments and things like that so yes there can be treatments but it sort of depends on what they mean by Night 58:14 Terrors and that would be a good question to ask either their neurologist or even a sleep specialist 58:20 thank you we're going to wrap up what with one more question um these questions were awesome I'm 58:26 sorry if we weren't able to get to all of them but um last one here I was diagnosed five months ago then I became motivated to 58:33 deal with obesity they had a BMI of 36 quickly under their care primary care 58:38 physician supervision with severe calories they use severe 58:43 calorie restriction plus dramatic increase in exercise they have been losing weight rapidly now at a BMI of 31 58:51 is rapid weight loss contraindicated no we worry about weight loss when 58:58 people are sort of a of a you know going into an underweight 59:03 um Range as well as when people are are losing weight without really intending 59:09 to like if somebody's really being um very diligent about their diet and 59:14 exercise um my concerns about this kind of speed 59:19 and the severe caloric restriction is it it's often unattainable so unfortunately a lot of people and this has nothing to 59:26 do with Parkinson's well sort of yo-yo in their weight so it's really a good idea to find something that's 59:32 sustainable and that you still feel like you're able to enjoy your life you know rather than it being an over restriction 59:40 but um if somebody is exercising one of the key points is strength training so that 59:47 they can maintain muscle because it's common for people especially as they get older once they lose muscle it's very 59:54 very hard to build it back so everybody needs to be doing strength training to maintain muscle bulk and bone density so 1:00:02 when you're when people lose weight unfortunately it's common to lose fat before they lose excuse me to lose 1:00:09 muscle before they lose fat and so you know you want to be very mindful of the 1:00:15 weight loss being the right kind of weight loss and to be a sustainable lifestyle for the long term but 1:00:22 congratulations yes that's quite unconsciousness well thank you so much Dr perotian for spending this time with 1:00:28 us we're very very grateful let's give her a round of applause virtual Applause 1:00:33 thank you thank you thank you um is is your PowerPoint going to be available yeah I'll email it to you and 1:00:40 um and I'll find the that Silver Linings questionnaire for you too okay thank you 1:00:46 so much or maybe I'll email Sarah yeah that's the best yes thank you okay good all right all right thank you for having 1:00:52 me thank you appreciate it absolutely so for our community here final quick couple of notes uh we hope you will join 1:00:59 us for our upcoming let's talk Parkinson's event which include programs on caregiving and cannabis and 1:01:04 Parkinson's you will receive information on how to register for these events soon uh through your email we are excited to 1:01:12 announce that pcla has been selected to be an official charity partner for the LA Marathon in the LA big 5K race if you 1:01:20 are interested in the Los Angeles and in the Los Angeles area we invite you to join us for the big La uh 5K on Saturday 1:01:28 March 18th uh 2023 to help us raise funds to continue our mission join us 1:01:35 you'll receive an email soon with details on how to participate again today's event was made possible by our 1:01:42 sponsors Abbott ABV Boston Scientific Medtronic and supernus and by you if you 1:01:50 enjoyed today's program please consider making a tax deductible deductible donation at PC ela.org and help us 1:01:56 spread the word by sharing our organization with your medical professionals and your network of friends on social media thank you 1:02:03 everyone stay safe stay well and don't forget a vote [Music] 1:02:12 [Applause]