Advanced treatments for parkinson's disease

Transcript

' 5 really the message is that deep brain stimulation is one of those tools that 0:20 allows you to do exactly what that goal is which is to live well today every day 0:26 you don't know if you're going to have tomorrow we don't know if we're going to cure Parkinson's but what we do know is 0:32 that we have this moment we have today and what DBS allows folks with Parkinson's to do is live better every 0:40 day so what is Parkinson's about 10 million people worldwide have Parkinson's and 0:48 it's a progressive neurodegenerative movement disorder it's marked by a decrease in dopamine in the brain that's 0:55 why they're talking about taking these dopamine agonists that's what those medications are we don't know what 1:00 causes it and in the United States there are approximately 1 million Americans living with Parkinson's 10 million 1:08 worldwide and about one percent of everybody out there in the United States will be affected over the age of 55 with 1:16 a diagnosis so that's a that's a good number of folks you probably know 1:21 somebody with Parkinson's and maybe you know somebody with deep brain stimulation too 1:27 so the symptoms include rigidity or stiffness some speech quieting of speech 1:33 slurring of speech tremor slow movements also known as bradykinesia shuffling of 1:40 your gait freezing of the gate a little bit of postural instability can occur 1:45 those are the known motor symptoms the things that everybody sees on the outside there's also some non-motor 1:52 symptoms like decreased sense of smell which can occur 20 years prior to the 1:58 onset of some of the motor symptoms insomnia or something called REM sleep 2:03 disorder where folks act out their dreams depression or disturbances of mood bladder or bowel dysfunction pain 2:12 from being stiff and slow chronic fatigue so there are some non-motor symptoms as 2:18 well it's not just the Tremor the stiffness and the slowness although that's what we're going to focus on with 2:24 deep brain stimulation so there are a lot of treatment options for Parkinson's Disease and surgery deep 2:31 brain stimulation Falls somewhere in the middle the first is exercise and I 2:36 cannot emphasize enough and that's why it's so wonderful that's got talked about it and that these gentlemen are 2:42 riding across America because what we do know is that without a doubt exercise is 2:49 so important for folks living with Parkinson's the next is medications and 2:54 there are a lot of series of medications I'm not a neurologist I don't prescribe medication so I'm just going to say that 3:00 if you do have Parkinson's finding a movement disorder neurologist near you who knows what the different classes are 3:08 the different interactions what medications may be best for you and for your situation is critically important 3:15 the next are ablative surgeries there are some ablative surgeries out there we used to do them a long time ago we've 3:21 started doing them again the problem with a blade of surgeries is that when you burn a hole ablation you're burning 3:28 a hole in the brain I imagine like dig a hole all right I actually wanted it two millimeters to 3:35 the left I actually wanted it smaller not bigger except I want that happening deep in the 3:41 brain good luck with that right so it's not that they're not effective it's just that they're not our first choice what 3:48 would be our first choice surgically is deep brain stimulation which has been around since 1992 for essential tremor 3:57 uh so we've got 30 plus years of experience in deep brain stimulation 4:02 worldwide this is not experimental I call it minimally invasive brain surgery 4:07 sort of off off the cheek but Jim may tell you that in fact it it really is 4:13 that and then the next most important thing and here's the thing folks who 4:18 have deep brain stimulation or a surgical procedure to help treat the symptoms of Parkinson's 4:25 the reason we're doing that is to help you move better so that you can do things like participate in neural 4:32 Rehabilitation and in exercise programs because that's what's going to make your life better at the end of the day 4:40 so there's no question that there are some changes in the quality of life as Parkinson's progresses and again it's 4:47 generally slowly Progressive but on multiple different scales that look at quality of life and different measures 4:54 of quality of life we can see over time we're looking at 9 to 12 years at the 5:00 end of that you get a decrease medications initially manage Parkinson's 5:05 very well so there's this sort of band in which there's a threshold that the 5:11 medication must reach to help treat the Tremor the stiffness the slowness and 5:16 then that reaches a point where there's something called dyskinesias where the medication actually induces those 5:23 abnormal uh movements that you saw on the video previously and early in 5:29 Parkinson's it's a pretty wide window in which medication Works before dyskinesias are reached but as 5:36 Parkinson's progresses from moderate to then Advanced you require more and more 5:42 medication to get a dose that will work for your Tremor your stiffness your 5:48 slowness and then that threshold whereby it works for your Tremor but then 5:53 induces dyskinesias becomes lower medication also begins to wear off 5:58 sooner so as as Jim talked about he started taking a couple of Doses and by 6:04 the time he was done he was taking it eight times a day or 30 pills a day so 6:10 those doses were becoming closer and closer together they were becoming less and less predictable and that's really 6:16 where deep brain stimulation comes in so let's talk about DBS for a minute the 6:22 first thing to do is to explore your options make sure that you know what options are available to you then see 6:28 somebody about deep brain stimulation and it doesn't always have to be that a 6:34 neurologist or a primary care Docker recommends it a lot of times folks just 6:39 show up in my office and say hey talk to me about this now it may not be the right time for them surgically but 6:46 there's never a bad time for me as a physician as a surgeon to sit down and 6:51 have a serious in-depth and important conversation about what one might expect when might be the right time to discuss 6:59 DBS then you undergo surgery and then that for the leads the wires 7:04 that go in the brain then you implant a generator or a battery in the chest wall and then you move on to programming 7:11 which is the lifelong portion of deep brain stimulation so really what we're delivering is a 7:18 high frequency electrical stimulation to very very specific deep structures in 7:24 the brain and for Parkinson's those structures are the stn or subthalamic 7:30 nucleus or GPI Globus pallidus internus essentially what it is is uh one might 7:37 think of it as a pacemaker for the brain or applying stimulation that overrides 7:43 the abnormal activity going on in the electrical circuits of the brain to bring it back into a better state 7:51 so there are many professionals involved in evaluating deep brain stimulation neurology is critical 7:58 neuropsychology is very important and so we're going to talk about a window for deep brain stimulation and 8:05 neuropsychology is there to look at at the cognitive effects the depressive 8:10 effects that Parkinson's can have because if one has too much Dementia or 8:16 too much depression deep brain stimulation can sometimes be harmful so we have to catch you in the the perfect 8:22 spot Rehabilitation my deal with my patients who I implant for Parkinson's is that 8:29 I'm going to put this in you but that means then you have to get out there and you have to go to your lsvt you have to 8:35 go to dance for Parkinson's you have to go to rock steady boxing you have to hop on your bike you have to move we're 8:42 letting you move better now you have to move because that's what's going to give you your quality of life at the end of 8:48 the day and then there's psychiatry in nursing so it's super important to know 8:53 that you actually have idiopathic Parkinson's disease there are a whole lot of things that look like Parkinson's 9:00 that are not and so it's really important to know that you have true Parkinson's disease as opposed to 9:05 parkinsonism and optimize your medications then review the potential risks benefits 9:12 and side effects you really need to know what you're getting into if somebody's going to operate on your brain review 9:18 your mood and cognition that's that neuropsych portion of things and then 9:24 know what your strengths your weaknesses are and always work to your strengths that's part of that attitude that's part 9:30 of that getting there and having a goal and then really understanding what your 9:35 long-term goals and your long-term care is so some predictors of potential 9:40 benefit are if you respond to the dopaminergic therapy cinemat Carbidopa 9:47 levodopa a whole bunch of them but the generic is carvidopa lipidopa the 9:52 response to that we like to see about a 30 percent response with the exception of tremor if your Tremor doesn't get 9:59 better with with Carbidopa levodopa so what we can make it better with DBS so 10:05 that's why we do something called on off testing where you come in off of your medication we want to look at how bad 10:11 you look with Parkinson's then we want to give you your medication and we do that motor sub score again because deep 10:18 brain stimulation works for the following symptoms tremor stiffness slowness sometimes freezing so 10:26 that's what we're looking at when we do that evaluation we'd like to see a 30 percent Improvement that will predict 10:32 that you will do well and then selecting the right patient somebody with appropriate expectations appropriate 10:40 goals putting the lead in the right spot that's where I come in that's what my 10:46 specialty is we're talking about spots that are about the size of an almond deep in your brain and in that almond 10:53 there are multiple parts and I need to be in that exact spot so half a millimeter a millimeter in One Direction 11:00 or another is a big difference so somebody who's really accurate putting the lead where you want it to be and 11:06 then after that somebody who's really good at turning the thing on and 11:12 programming it so that it specifically treats each patient that personalized 11:18 programming therapy so that window that we talked about is 11:24 when medication becomes less effective but hasn't stopped working and when 11:30 there is not significant cognitive Dementia or severe depression the worst 11:36 thing that can happen for me is somebody comes to me and they say well it's brain surgery so I'm just going to wait until 11:42 that's my last option in fact that's not true in fact it can be too late and it's 11:49 heartbreaking to have to say to somebody you know look if I'd seen you six months ago a year ago even a year or six months 11:56 ago even we probably could have implanted this and helped you but now you're no longer a candidate so this is 12:02 not a treatment of Last Resort it's also not a treatment of Last Resort because 12:07 as I'm going to show you with the data you live well and you live better with 12:13 deep brain stimulation than you do with medication alone so why wouldn't you want to live well and better or earlier 12:21 and we have a lot of data now that shows that it is safer to implant earlier in 12:27 Parkinson's than we originally thought so you can expect Tremor reduction 12:33 increased Mobility medication reduction and here's the key overall Improvement 12:39 in quality of life and that's what we're here to talk about today right living better today with your Parkinson's now 12:47 there are some risks and Adverse Events there's a small risk of hemorrhage small 12:52 risk of infection small risk that it's not in the right spot which is why we oftentimes do this awake so that we know 12:584 risks when it comes to the the benefit that one could achieve 13:11 I'm a bioethicist they mentioned that so this is super important no matter where 13:17 you are considering deep brain stimulation make sure that your goals are going to be met for instance deep 13:24 brain stimulation doesn't work for balance so if balance is one of your goals 13:30 and you don't understand that your balance will not improve then you're 13:35 going to be unhappy even if you can now drink from a coffee cup and hold the 13:41 newspaper without rattling and move better even though you're feeling better if your goals are not met you will not 13:47 be happy so make sure that you have reasonable goals and expectations it's 13:52 important that you have family and social support because you're going to have to go back and forth to programming 13:59 appointments and it's surgery you need somebody to stay with you and you you 14:04 want to have your family on board with all of your treatment your Care Partners are so important overall in Parkinson's 14:11 but when it comes to surgery so it should only be done on the right person for the right reasons and that is 14:17 critical in my mind so where do we stimulate we stimulate those areas called the stn and the GPI 14:25 and they're really small so being accurate super important 14:30 the surgical Technique we use very sophisticated Imaging and software that allows us to hit precisely where we 14:37 think we're going to be and then because I do this surgery awake I listen to 14:43 every single spot in the brain all the way down because different parts of the brain sound different so that we're sure 14:51 that we've hit the right spot we use what's called stereotaxi so you 14:56 use a frame which is that top picture or a frameless system which is the one sitting in the hand to allow us to get 15:03 from the outside to the inside essentially using Cartesian geometry to get there 15:09 we place the electrode or the wires one on one side one on the other and then in 15:15 a separate surgery connect those to a battery people call it a battery it's technically called an internal pulse 15:21 generator if we want to get fancy about it you know us doctors we have to use big words to justify our educations but 15:28 that battery or ipg and the chest wall it's all buried underneath the skin and can be programmed remotely 15:35 not remotely can be programmed non-invasively eventually it's going to be programmed remotely that I predict so 15:42 looking here is that is that microelectrode recording what we hear in the brain as we come to the right spot 15:49 that stn that big blue line in the middle is what I'm looking for and listening for in surgery we move your 15:56 arm around we listen to it we hear those cells fire so that we're sure we're in 16:01 that tiny spot in that almond deep in your brain then we put the wire in and 16:06 we put the wire in we actually test I watch your Tremor go away I watch you in 16:13 surgery move faster move better have less Tremor so that we are sure that not 16:20 only do we have it in the general area which is precise but in the exact right area very precise looking for any 16:27 programming side effects we then you go home you come back you have the 16:32 generator you go home again that's an outpatient procedure the generator and then you work on programming and 16:39 programming is really where the rubber hits the road and you start Physical Therapy occupational therapy speech 16:46 therapy and then long term we monitor the hardware every now and again and by every now and again every 9 to 15 years 16:53 or so depending on which battery you have you have to have a tiny surgery to have it popped out pop back in I joke if 16:59 I had a zipper I would love to install a zipper but they won't let me so 17:04 um anyhow so the rehab goals are functional mobility gate transfers functional activities of 17:10 daily living improve posture and balance and speech strength Mobility preventing 17:17 aspiration bowel or bladder continents all of these safe environments all of these things are your goals after you 17:23 have this implanted so programming's super important because we need a precise control of that 17:30 stimulation there are a couple of different kinds of systems out there and the newer systems that advanced part are 17:36 these leads that are very directional there are circles at the top and the bottom and the circles provide a ring of 17:44 stimulation but the two middle contacts on that lead are cut into thirds and 17:50 those thirds can then drive stimulation to different parts of the brain so that 17:56 as Parkinson's advances we can increase stimulation driving it away from an area 18:02 that might be a side effect all part stimulation side effects are from stimulating areas around this almond in 18:09 the brain and push it towards the effective areas so that we can be more effective 18:15 long-term in stimulating the other Advance is that for instance the Boston 18:21 Scientific lead has something called multiple independent current control in 18:26 electricity here's a little physics lesson for you you send electricity down a wire if you send it down a wire and 18:33 it's just a single wire it's just going to go to one spot if you send it down a wire and it splits there's a splitter at 18:41 the end and it splits theoretically you can say send 30 percent here and 40 you 18:47 know 70 percent here can't do math today apparently but what really happens is 18:52 the electricity is going to follow where the path of least resistance is that's basic physics and so even though you say 18:59 30 here and 40 here to give us the best you might end up with 50 here and 50 19:05 there because the tissue resistance in those areas is so different so so the 19:11 fact that each one of those leads each one of those contacts has its own independent current is critical 19:19 in getting you the most precise simulation out there and that's what that multiple Independence like turning 19:25 on one light switch versus being able to turn on two or three of the the light switches below 19:31 and that's what we're talking about here so then how does my doctor know where which one of those four sets do I pick 19:39 well every brain's different and so that's why we test in surgery that's why we do it awake and and so programming 19:46 your device is a really important step and it can take some time as Jim said and it can require some practice 19:53 one of the other advances that we have is something called image guided programming and so if you compare 19:59 programming to sort of a treasure hunt through the forest the forest is your brain and so this treasure is The Sweet 20:06 Spot inside of your brain right and so in traditional programming it's dark it's night you don't have a flashlight 20:12 you have a map you don't have anything so you're sort of feeling your way around let me try this let me try that 20:18 let me try that it can take a lot of time and because every brain is different it can be very difficult and 20:26 that's why you need a good programmer Thing One and Thing Two you really need somebody who who has that time with 20:33 image guided programming where we take images from surgery and where your lead 20:38 ended up we can create a personalized map so you can send that person out to 20:44 find that treasure instead of in the dark they're finding in the daylight they know where to go they have an x 20:49 marks the spot and so it's designed for efficiency and so you can cut that programming by about 56 percent with 20:57 image guided programming which is great for folks when when the programming sessions can be long and they can be 21:03 draining and you have to come back and forth and so the image that you see on the left is 21:09 the map and the treasure is finding that exact spot or that exact perfect programming for each person taking the 21:17 trial and error out of it so we can personalize it to your Anatomy 21:23 so outcomes show that there's about six hours plus or minus 3.8 hours increase 21:30 in that on time and that time where you're getting effect like you would from your cinemat getting a fact with 21:36 your Tremor your stiffness your slowness and this was done at 23 sites randomized 21:41 around the country to find this exact purpose here's some other evidence what 21:46 is the general data on DBS does it work well I mean Jim just told you it did I'm 21:52 telling you it did but you know this is New England Journal of Medicine Journal of American Medical Association I mean 21:57 that these tiny little journals nobody ever reads right actually these are really great studies so the primary 22:03 evidence um is is spectacular so if you look I love these graphs because everything 22:08 above the LIE is an improvement everything below that line is a decline 22:15 everything in the dark blue is deep brain stimulation everything in the bright blue is medication with nothing 22:21 else without a doubt you can see at every single one of those measures in both of 22:29 those studies both long-standing and recent deep brain stimulation did better 22:34 than medication alone better than medication alone you say well what about that that guy down at 22:40 the bottom that guy right here and right here you know what those are those are decreases in medication so it actually 22:47 you know you should flip it in your head because that means that those folks could also cut their medication by a 22:54 marked amount and that's um significant at 24 months post implant uh 23:01 DBS therapy along with medication improved quality of life all the way 23:06 across the board all the way across the board and that at the end of the day is what's most important the quality of 23:13 life it provided additional hours of on time without dyskinesia so that's super 23:19 important again Baseline is the green dark blue to be consistent is deep brain 23:24 stimulation so they're on they're feeling better they're moving better they're just living better with deep 23:31 brain stimulation than at their Baseline with medication alone and so it improved a 30 significant 23:39 reduction in that off time uh compared to two percent with medication at 24 23:45 months and uh an additional reduction of 2.9 hours a day of off time or 49.9 23:53 reduction I mean you can't if I had another 49.9 percent of my day or two 23:59 2.9 hours in my day so I was at like 27 hours you know what I could get done all 24:06 the things that I can't get done every day that's what deep brain stimulation helps folk folks with Parkinson's do and 24:14 again here's just another quality of life like I can't emphasize enough that quality of life just is better quality 24:22 of life quantity of Life complications from Parkinson's they're all better 24:27 it improves activities of daily living Baseline and at 24 months and it reduced 24:33 medications and just in the interest of time it also reduced drug-related complications that seems like it makes a 24:40 lot of sense right you're taking less medications so you have fewer complications it also gives you a bigger 24:46 window so if you can pull back your medication remember we have that threshold for dyskinesias and side 24:52 effects you can pull it back to what it was 10 years ago or 12 years ago it 24:57 gives you a lot of time because deep brain stimulation doesn't cure Parkinson's but it does work like lifelong so it gives you a bigger window 25:05 to add meds back in that we're causing you problems before 25:10 so when in summary do you consider well a diagnosis or at least symptoms for 25:16 four years it's responsive to that Carbidopa levodopa combination or its Tremor that 25:24 doesn't respond we don't care we can fix Tremor with deep brain stimulation and you're starting to have dyskinesias or 25:31 motor fluctuations for a minimum of about four months or longer before we 25:37 implant 25:44 good afternoon it's a pleasure and honor to be here a special thanks to um our 25:49 friends at Boston Scientific who are sponsoring part of our trip Parkinson's Across America I'm privileged to be here 25:56 with my good friend Jim Morgan who you hear from in a couple minutes but I want to talk to you about life with Parkinson's I've had Parkinson's for 16 26:04 years in a so many people I think when first diagnosed think it's the end of the the 26:11 world the end of the rope and I want to talk to you about making a choice choosing to live well with Parkinson's 26:17 disease because both Jim and myself do think it's a choice who are we Jim came up with this line he 26:24 likes to say we're just two ordinary guys with Parkinson's disease trying to make a difference or like somebody here 26:29 in attendance said a little bit ago were too old ordinary guys trying to make a difference 26:35 I mentioned earlier I've been diagnosed for 16 years and like most of you out there that have Parkinson's I realized 26:41 that I had symptoms long before that Jim is a retired attorney and we share something in common we both have been 26:47 diagnosed about 16 years ago so let's kind of get in the meat of things what's our goal today 26:53 we want to Hope give you hope and encouragement if you're like us and have Parkinson's disease you might be a care partner you 27:00 might be a relative a family member a friend but hope and encouragement is really the theme of Parkinson's Across 27:06 America I mentioned earlier when you hear those words you have Parkinson's it does take your breath 27:13 away but it's certainly not a death sentence and you're going to think this sounds odd but I would argue that it's 27:18 an opportunity it's an opportunity to make a difference I don't want to suggest that living with Parkinson's is 27:24 easy because it presents great challenges but I think we all must come to the realization there are some things in 27:30 life that are beyond our control and the fact that if you're diagnosed with Parkinson's like I was it's not 27:35 something we chose it's our beyond our it's beyond our control and I think the earlier in our 27:41 kind of a journey with Parkinson's is that we accept that and understand that I think the healthier will be I'm not 27:47 suggesting again that that's easy so Parkinson's disease is a new way of life and Jim and myself think that there are 27:54 four specific factors that really make life better if you choose to to follow these factors 28:00 attitude exercise strategy and involvement so I'm going to roll through a couple of these and then I'm going to 28:06 turn it over to Jim in a little bit if I had to pick one of these four items that I personally think in my journey 28:12 has been the most important I would argue its attitude attitude's something I can control 28:19 when you have Parkinson's there's so many things you can't control so people often say to me they'll say hey Scott what's it like to have Parkinson's 28:25 disease and for years I tried to think of a good way to explain that so this is going to be kind of odd you see on the 28:31 screen there's a picture of a commode study that picture closely look in the windowsill there's a roll of toilet 28:37 paper now this was a um a VRBO I was staying on with a friend of group of 28:42 friends we were doing a bike ride across the state of Ohio from Cleveland to Cincinnati and we stopped here 28:49 and I thought you know what that really represents what Parkinson's disease is like that's that's just not right it's 28:55 everything's kind of off in that picture a roll of toilet paper should never be in the windowsill right well Parkinson's 29:01 is kind of like that everything's sort of off each day is a little different than the other day 29:07 and that's really the best way I could describe what it's like I wonder have you ever heard somebody 29:12 say I'm not going to be defined by X and that could be anything from cancer to 29:18 diabetes to something that happened in their past well what Jim Morgan and Scott Ryder are 29:24 here to tell you that we're just the opposite we decided early on that we were okay being known as the 29:30 guys with Parkinson's disease now you may think that's kind of strange but let me share why we said that 29:36 but I want to tell you first I'm not going to kid you that when I receive that received that word 29:41 I was sad for a minute I will tell you I cried I stepped out on the sidewalk with my 29:48 wife and she said a few words I'll never forget she said it'll be okay 29:54 and that was it I flipped the switch and I said you know what I'm going to use this to help other people with 29:59 Parkinson's disease and I've come to realize that everybody has challenges in life it may be Financial it might be 30:05 relationships it could be with an employer but everybody has challenges in life so 30:12 our challenges with Parkinson's are really no different than other people have and I also knew that people would 30:18 be watching house Scott Ryder how's Jim Morgan how are we going to handle those challenges 30:23 so I want to tell you a little secret and it's really not a secret but helping others 30:30 helps us too in fact sometimes I feel guilty if I do a presentation or reach out to somebody or have coffee 30:37 with somebody that's newly diagnosed I feel like I get more from it than they do and I almost feel guilty for that 30:44 and I think that's something that each of you that are listening to could kind of grab onto the more you help others I 30:50 think the better you're going to feel about yourself I'm going to spare you the song that I'm going to share with you on kind of my age group or my genre 30:57 of music you might remember a group called Foreigner and they played a song called Head Games I won't sing it for 31:03 you because I don't want to end this meeting prematurely but that's kind of the tune if you remember 31:10 that so I think one of the ways I've coped with Parkinson's is I'm calling it head 31:16 games now my oldest daughter is a psychologist she said dad would you stop using that terminology in your presentation it's called cognitive 31:23 restructuring I said yes ma'am thank you I call it mind games 31:29 I think there's certain things you really just have to accept that I've had to accept having Parkinson's is not the 31:34 life that I imagine it's not the life that I thought I would ever live but the sooner that I accepted the fact 31:40 that I wasn't going to live life the way I thought I was going to live the better off I was going to be 31:45 I can't think too far in advance I don't know what tomorrow's going to bring I don't know what the next five 31:51 minutes is going to bring so you know what matters the most and I say this to every one of you that 31:56 are watching this it's this minute this moment right now that we're spending time together 32:01 that's the most important thing that we can all grasp on to there's no value in thinking too far ahead there's no value 32:07 in thinking am I going to be able to walk am I going to lose this ability to do this or that it's right now it's this 32:13 moment that counts so on the screen I'm not sure why but 32:20 there's four slides I didn't mean it to do that but when you have Parkinson's things happen like that so I'm going to see if somebody can come up here and 32:26 help me she says she's happy to help I'm going to talk about that in a minute too I'm 32:32 not sure how I did that but it's great thank you so let's go to the next slide I think it's helpful to have 32:38 a sense of humor Jim despises my jokes but there are a few Parkinson's jokes that 32:44 um I always say do you know what's black and all over the place anybody know my signature 32:50 I think that's kind of funny I'm a graduate of the Ohio State University and I'm being more serious now I don't 32:55 know if you know this but they have a school of veterinary medicine there and um they are doing a bovine study and 33:01 they've realized that cattle bovine have Parkinson's disease 33:07 they call that beef jerky I know it's pretty good 33:12 so I think it's important to have a strategy and I keep referencing Jim who you're going to meet in a minute he had 33:19 a very important strategy but I think it's important that each of us have our own strategy there's a couple things we 33:25 need to know that we know if we have Parkinson's many of us tend to avoid social 33:30 situations and there's plenty of research out there to show you that people that don't avoid social situations people that are more social 33:37 really battle Parkinson's is a lot better than people that tend to withdraw 33:42 so what I'm encouraging you to do is if you're one of those people that tends to seek seclusion because you're worried 33:47 about what somebody thinks about their Tremor are you worried about your speech are you worried about drooling things 33:52 that I've all done in front of other people don't be that way get out 33:58 be amongst people you're going to benefit from it but have a plan so if you're going to a social situation 34:04 think about your care partner they want to be with you they love you they don't they love you unconditionally 34:09 the fact that you have certain things that present themselves like a tremor doesn't cause embarrassment to 34:17 your care partner seclusion is not good for any of us people care about you how many times 34:23 does somebody walk up at you and they'll say my last name's writer they'll say writer writer how are you doing no 34:29 really how you doing so I think it's important to demonstrate that we can live well with Parkinson's 34:35 disease I say have a pre-planned introduction so this may seem corny to you if I walk up to somebody I shake 34:41 their hand I make them hold my hand until they feel my trimmer I said hey my name's Scott Ryder I have Parkinson's disease but I said don't worry it's not 34:47 contagious they laugh I laugh and the pressure's all off think about the type of glass you're 34:53 going to hold I don't like those long stem glasses that's just not comfortable if you're 34:58 going to a party or social situation where there's going to be small food items you don't want to pick it up eat before you go nobody's watching whether 35:04 you eat at the party or not I think we think people observe us more than they do 35:10 scout out the room before you get in there I look at a room and I avoid certain narrow Pathways or I avoid 35:15 certain shares things of that nature use the bathroom before you go makes it 35:20 so much easier before you go to a social situation and you know what never hesitate to ask I was in an airport in 35:27 Seattle Washington and I'm an airline representative walk up to me and said sir can I help you I said no I'm doing 35:33 great and then I stumbled over a few more chairs she said sir could I help you I said no I'm doing great she said sir please may I help you and the next 35:39 thing I know I was in a wheelchair it was kind of cool I was filming myself going through the airport with this guy pushing me on a wheelchair I've asked 35:46 people on while I'm biking to help me clip in I clip in on my bike because like I've asked people to help me unclip 35:52 people are willing to help if you don't know how to movement 35:57 disorder specialist is talk to somebody that can help you understand what a movement disorder specialist is find somebody that's had 36:04 Parkinson's for a while this is my personal opinion doesn't represent the opinion of anybody else 36:09 but if you have Parkinson's I want to see the person that's best equipped and best trained that has the 36:15 most knowledge to help me battle this disease it's not a simple disease we know that only nine percent of people 36:20 with Parkinson see a movement disorder specialist we also know there's a shortage of movement disorder specialists 36:26 and that's something that I'm a lot of organizations are working to change so we talked about choosing well to live 36:33 with Parkinson's disease it's a choice now let's talk about exercise real quick 36:39 I think exercise is as important as medication I'm not suggesting that we stop taking our medication I would never 36:44 suggest that Total Health Works is one of our sponsors for Parkinson's Across America 36:50 there's Rock Steady boxing there's so many great programs all around the 36:55 nation but exercise exercise daily I'm told that getting your heart rate is up 37:01 getting your heart rate up elevated is really important you know you can hire a personal trainer that'll come to your 37:06 house to help you exercise there are so many options with exercise a friend of mine invented these things 37:12 called ziti sticks if you've never heard of them just Google it zinny sticks I'm going to spare you the video 37:18 because it's old but if you have any challenge with walking with cadence a 37:24 stride these things are amazing I have some personally and it helps you develop 37:30 a Cadence and get proper arm swing my really point point being is that there are so many tools available for people 37:36 in Parkinson's I'm David Zid and I'm here that's all we're going to see if David did but he's the inventor of ziti 37:41 sticks find a type of exercise that you enjoy 37:47 Jim he likes yoga I like biking Jim likes boxing I like to try to run I 37:54 can't really run anymore but find something that you really feel good about the reason I like biking is it 37:59 allows me to move and Parkinson's is a movement disorder so I feel free I often say when I'm on a 38:05 bike I feel like a cowboy on a horse I can just go and that's a great feeling so rock steady boxing is really popular 38:12 I kind of like boxing sometimes because it allows me to get some of my frustrations out but it's about movement 38:17 it's about exercise it's about camaraderie spending time with other people set a goal 38:24 put it in writing it's only a goal if you put it in writing so exercise is important involvement 38:32 I probably have received more benefits more knowledge more information from 38:38 being involved with Parkinson's organizations than the average person because I'm 38:45 heavily involved so if you're not involved get involved 38:50 this meeting is coming to you from Boulder Colorado there's so many great 38:55 organizations around here there's the Davis Finney organization there's tons there's a Parkinson's Foundation but 39:02 what happens when you get involved is you meet people that inspire you in the Parkinson's world is filled with lots 39:09 and lots of inspiring people and you find out that living with PD is a way of life 39:15 so I'm encouraging you to immerse yourself in the Parkinson's World join a support group and I don't want to hear 39:20 that excuse I'm not going to the support group because all there is a bunch of old shaky people in there I hear that 39:25 all the time go because you're going to help somebody else which is going to help you it's a place to get encouragement to give 39:32 encouragement and it's a place to gain knowledge so there's lots of great organizations 39:37 within the Parkinson's Community there's the Michael J fox Foundation there's the Davis Finney Foundation the Brian Grant 39:43 Foundation there's the Parkinson's Foundation I could go on and on and on so Parkinson's Across America we've 39:50 chosen to align ourselves with the Parkinson's Foundation and they're all about making life better 39:55 today and I mentioned earlier that today is what's important now we talked a little bit about strategy I'm going to 40:00 turn the microphone over to Jim and Jim's going to talk to you about a strategy decision he made as far as 40:07 managing his health and his decision to have a DBS and I think you'll find it 40:13 interesting Jim's story is amazing it's inspiring and the before and after it's 40:18 a complete makeover I think you'll find it pretty encouraging so Jim 40:23 thank you Scott yeah we thought it'd be useful for me to 40:28 describe a little bit about my experience with DBS and kind of the my experience with Parkinson's leading up 40:34 to it it turns out that I did have dbf surgery and I celebrated my second anniversary on Friday I had it at done 40:43 at the University of Miami the implants were inserted on September 16th and the device was inserted in on 40:52 the 23rd and that says 2022 but it should be uh 2020 40:58 2020. um you know I I was I I tell the story 41:05 about kind of how I decided that I had Parkinson's it was decided for me I had 41:11 gotten a call from a client on a Thursday night and asked me to be in Santa Monica California from Miami 41:18 the next morning by noon time and said you know he promised me that I'd be home 41:23 by Tuesday just wanted me to go out and close the deal and it turns out that after six weeks on 41:31 the road from Santa Monica to LA to New York ultimately to Miami 41:38 we it was probably one of the worst deals that I'd ever done in my life but by the time I got home I couldn't 41:44 sign my name I couldn't write my name and I couldn't type on the computer and so after a long story my experience 41:52 was probably the same as anybody else's I ultimately found my way to a 41:58 neurologist and and he asked what what I was there for today and I said you know I think I have that secretary's disease 42:04 I think you call it carpal tunnel he laughed and I laughed and he said no you had Parkinson's disease and that was 42:11 pretty much the way I was diagnosed so my Parkinson's progressed pretty 42:18 slowly in the first few years and um my my experience was more with rigidity 42:25 or bradykinesia than it was with tremors so I was able to live with it 42:30 but I ultimately started trying all the different meds and all of the ugly side 42:35 effects that came with them you know the headaches the nausea the drowsiness the brain fog I had it all 42:42 and I ultimately had to switch to Carbidopa levodopa and different times 42:47 cinemats to levo and that was necessary for me to continue to function at work 42:55 and the more I took the more severe my dyskinesia got and I think that was when it really started to become the downfall 43:02 for me to counter that dyskinesia I started taking emancipine and that caused 43:08 drowsiness you know everything builds one on the other and I knew that that was a problem one morning when I woke up 43:15 I had bumped into the lady in front of me at the red light having Fall Fallen totally asleep 43:21 but at the time of my surgery I took probably eight to ten cinemat 43:26 pills a day I wore the highest dose of new Pro patch the 24 hour time to 43:32 release dopamine Agonist and that causes all sorts of different 43:38 things the extended release Carbidopa levodopa I took at bedtime just so that I could wake up in the morning without 43:44 severe dystonia in my feet are cramping and I took the extended release of 43:50 manitine for dyskinesia but the things that bothered me the most 43:55 were I think the brain fog and the drowsiness and they began to severely impact my 44:01 ability to work I had difficulty concentrating as a lawyer I would review 44:07 documents that were hundreds of pages long and I'd get to the end of a document and think about something at the beginning 44:13 that I wanted to go back and look at and I'd start flipping backwards only to 44:18 forget what I went looking for to begin with and so concentrating was a real 44:24 problem for me and as I mentioned you know the the the drowsiness I can remember 44:30 falling asleep on several occasions and conference calls one of which uh that I 44:36 know of I was it was mid-sentence and I was the guy talking and so I knew that that was going to be 44:42 a problem but ultimately the the biggest problem for me was dyskinesia and I wanted to share with you me before 44:50 deep brain stimulation surgery this is a video that Scott and I made for an event that we're going to host in 44:57 California that year just to give you an idea of my destination and this is Scott Ryder 45:04 together we are the co-chairs for the inaugural 45:10 Parkinson's foundation's volunteer Leadership Summit if we can remember we have a couple of important reminders to 45:16 share with you number one dress is casual we want you to be comfortable and 45:21 I want you to relax and take this as an opportunity to meet as many people as 45:26 you can and form relationships around the country because that will make us a stronger Foundation 45:33 number three or is it number two I don't remember but 45:41 um but anyhow that's me before this is me after and you know all I can say is that my 45:48 life has been changed uh because of the the DBS and I've reduced my meds from 45:54 the equivalent of 30 pills a day to a very low dose of Rye Terry four times a 45:59 day and all of that brain fog and dyskinesia are gone and all of that's thanks to uh 46:08 the DBS surgery you know people say what what's the one thing you the advice 46:15 that you would give and everybody always says I wish I did it sooner and um it's it's totally true 46:23 um it was not not the horrible experience that I was anticipating and it's much easier than you could have 46:32 ever imagined you do have to be patient with post surgery stimuli programming 46:38 because your body needs to adjust to the new stimulation you just your body really it's something totally foreign 46:44 and you have to understand what the stimulation is and isn't doing for you 46:51 um I when I first was was diagnosed and and or I'm sorry first programmed uh I 46:57 couldn't ride a bike because I couldn't keep my foot on the pedal and I thought that that was because there was not 47:04 enough stimulation so I'd Crank It Up on that side only to realize that I was 47:09 causing the dyskinesia with too much stimulation and that's the kind of thing that you have to learn as you as you experience 47:15 it but you've got to be realistic in your expectations uh several friends have come out of DBS and not taken a 47:23 single pill since I'm not sure that that's very realistic but certainly my experience has been that you can 47:31 significantly reduce the the medications and all of the horrible side effects 47:36 that go with that great thank you so much uh to all of the 47:41 speakers that was extremely uh informative and we do have a lot of 47:47 questions and I think we will receive several more as we move 47:52 along here um so the first question that came in 48:01 is by a guest who says I have Cochlear implants is DBS doable must you have an 48:09 MRI or or RCT scans sufficient 48:14 it can be very difficult and it's surgeon dependent uh ideally it would be 48:20 an MRI because the way that we choose the spot in the brain is based upon some structures and some known anatomic 48:28 variants from those structures and some measurements that we take in your own brain 48:34 I have done one or two deep brain stimulation procedures with patients who 48:40 could not have MRIs they were difficult and so in those patients because I'm an 48:47 ethicist it was you know look we have no other option we can try this but we may 48:52 not find the spot you may be undertaking this risk to not find the spot there um 48:58 and so the most ideal and there are some surgeons who simply say absolutely not you must be able to have an MRI however 49:08 with with very very very rare exception some surgeons and I don't want to speak 49:14 for my other colleagues might be willing to consider placing with a CT depending 49:19 on how good the image quality is thank you 49:25 this guest says I know someone I know someone who started to show Parkinson's disease symptoms after using 49:34 effinine shoot it's eye drops for glaucoma 49:39 um it is I can't pronounce it is it possible that that could cause Parkinson's 49:46 um I don't have any data on that I've never read a study on that I'm going to suspect that more likely they the 49:54 symptoms were there and subtle and became more evident it they can become 50:00 evident as Jim said like in a stressful situation he probably had those symptoms 50:05 or many of them but you know you just you don't think about it or they're very mild but then you sort of reach a 50:11 threshold and you fall off so while there are some associations with 50:17 chemical pesticide type exposures way 50:22 back in the day and that kind of thing they're very loose and so I I'm not aware of that one in particular and I 50:27 suspect it was probably more likely that you know being hyper aware of some things you become hyper aware or you've 50:33 reached a point at which symptoms become more obvious that's my thought not 50:39 knowing somebody and and not being terribly aware right of that 50:44 oh here's a guess that says my mom uh my mom had DBS dementia immediately ensued 50:52 it is not always a positive outcome right so that's where I talked about that neuropsychological evaluation being 51:00 absolutely critical the cutoff is a moderate to severe dementia and so when 51:08 DBS is evaluated appropriately one would actually undergo a very rigorous 51:15 neuropsychological evaluation if mild cognitive decline was indicated or even 51:22 multi-moderate there are two strategies one is to Stage doing one lead and then 51:27 another lead the other strategy would be to use GPI instead of stn which doesn't 51:34 allow as much medication reduction but does allow us to implant 51:40 slightly safer it's gentler on the brain but there is no question that if somebody has a moderate dementia and 51:48 undergoes deep brain stimulation there is a risk of worsening the cognitive side effects that's why I say 51:55 appropriate value evaluation including and critically including 52:00 neuropsych evaluations are important because we can make people worse with 52:07 deep brain stimulation in certain settings and I don't know about you but I'm just not out there to make people 52:13 worse just because I can doesn't mean I should and so that's why it's so critical to really understand what the 52:20 neuropsychological profile is and make a very very careful decision when you 52:28 start to head into cognitive decline thank you I've had several questions 52:35 about the device itself and one of which is 52:42 can you kind of just show us it and can 52:47 you demonstrate how to charge this device sure this is the charger they call it a it's 52:54 like a hockey puck it's about that size and it comes with a harness that 53:02 you can put put it in the harness I can never get it in I don't use the harness as much as I probably should I 53:10 just lay back while I'm resting and when you're on the right spot 53:17 it'll tell you by stopping the beep and then when you're fully charged and I haven't charged for a week so it's going 53:23 to be a while but when you're fully charged it beeps a different beep and you'll know that you're done 53:29 and then it comes with a device like this which is like a TV remote almost I have 53:36 to hide it from my wife because when she gets angry at me I don't want her to know where this is but I can literally 53:42 turn myself off entirely where I can adjust the stimulation on either side or 53:47 both sides within within limits no 53:54 wonderful that that is great um and also we've had the question is 53:59 what is the implant made of uh do you do any allergic allergy 54:04 testing or anything about you know the makeup of the device itself we don't so 54:10 so the device has uh it's elastic and typically a titanium non-ferromagnetic 54:17 coat so these devices are MRI compatible or or MRI conditional is what we would 54:22 say so as long as there's electrical Integrity there's no break in the device then devices implanted today are are 54:30 typically MRI conditional so you could have MRIs I have never not once and I've 54:36 been doing deep brain stimulation in private practice for 12 years you add my 54:42 fellowship at the Cleveland Clinic and then my residency I started my residency in 2005 and we were implanting DBS back 54:49 then so in all that time I've not once had a patient have an allergy to any of 54:56 the implants these are the same that are used in spinal cord stimulators and other implanted devices and the body but 55:02 we don't do testing unless somebody came and said well I have a whole bunch of sort of allergies but I'm not really 55:08 sure what testing one could do other than taping it to their skin to see if they have a reaction but they should not 55:15 they shouldn't be reactive materials I have a guest here we're sad to say 55:21 that his dad died from PSP Progressive 55:26 palsy and could something like DBS have helped no 55:32 so that's when I say it's very important to understand your actual diagnosis there's this umbrella of diagnoses 55:40 called parkinsonism parkinsonism is nothing more than people who Tremor 55:45 stiffness and slowness under parkinsonism there's Parkinson's disease that's the vast majority and then there 55:52 are a whole bunch of other disease States PSP MSA I could list in alphabet 55:58 soup of other a Lewy Body dementia alphabet soup of other things that fall 56:04 under this umbrella of parkinsonism deep brain stimulation is for idiopathic 56:10 Parkinson's disease all those others actually can be worsened with deep brain 56:15 stimulation and the reason that we wait for that four-year time period we're 56:20 shortening it down to two years sometimes with some of the studies that Dr Charles out of Vanderbilt is looking 56:25 at Etc but but the reason we wait that time period is because those other 56:31 parkinsonisms will usually rear their ugly ahead and progress faster and show 56:36 other things like for instance in PSP eye movement abnormalities that would let us know so 56:43 we want to exclude those and make sure that we're only implanting folks that we 56:49 can help and not worsen exactly there were a couple of questions about Lewy Body Disease and is this 56:56 appropriate with um a Lewy Body diagnosis same thing it's one of those 57:02 parkinsonisms unfortunately that progresses more rapidly that has that dementia piece 57:08 which in and of itself would be an excluder a question for Scott have you had DBS 57:16 and would you consider having it I have not had DBS I would consider having it um I have a voicemail in my 57:24 phone right now from the Medical University of South Carolina asking me when I'm coming in to be evaluated to see if I'm a candidate 57:31 for DBS and I'll tell you part of that has um that's a result really of this journey 57:38 that Jim and I are making I've learned from watching jim I've learned from my association with Boston Scientific just 57:45 how far your DBS has advanced in the past few years and it's um increase my confidence a lot 57:51 and so um it's under consideration excellent can we talk a minute about cost and 57:59 insurance coverage so it is covered by Medicare and it is FDA approved there are about 1.6 billion 58:08 different Insurance that's an exact number right billion different insurance plans and types of coverage and so what 58:15 typically would happen is you would be evaluated and then if you're found to be a candidate get submitted to your 58:22 insurance again covered by Medicare approved by the FDA and so if you have a 58:27 team that really knows what they're doing you can get it approved not only that but I have yet to have a patient 58:34 come through who's been approved who hasn't had an out-of-pocket expense that was exorbitant and so this was 58:40 affordable but again my brain Can Only Hold it's pea sized it can only hold so 58:46 much and it cannot hold all the insurance information but we have Specialists our offices are set up to 58:52 sort of push that through and if an insurance pushes back with me then then I fight back and I fight for my patient 58:59 because that's the right thing if I think this is the right right thing and the patient is on board and says this is 59:04 the right thing there's what do you have to argue with we have FDA approval it's been around for 30 59:11 years it's safe it's not experimental and so I really don't find it to be an impediment but could I tell you how much 59:17 it costs each separate person I couldn't off the top of my head if I'm being honest 59:23 right how often do you charge your DBS I 59:29 charge mine about it every week or week and a half unless I'm traveling I've gone as long as about three weeks and 59:37 even still the um the charger indicates that I'm fully charged so it'll last for quite a while and does that vary from 59:44 Patient to Patient yes do you think it does it varies from Patient to Patient and so that's one of 59:51 the advances we've had rechargeable deep brain stimulation for quite a long time but one of the advances with the Boston 59:57 Scientific for a size generator in particular is that charging interval is very long so it it allows you to to keep 1:00:05 a generator for a long time I mean 15 years is like a crazy we used to have to 1:00:11 change generators every three to five years and every time you have surgery there's a risk of infection Etc now that 1:00:17 you can can maintain a generator that that gets you 15 years I mean I'll be 1:00:22 honest I'm probably gonna be retired in 15 years I've been at this a long time right it might be the next person 1:00:27 changing that generator uh but but that's an advancement and the other advancement is that long charging 1:00:34 interval it used to be that you had to charge every day with with different charging devices and so this advance in 1:00:43 this generator is just breathtaking but if you're using more energy if you if 1:00:49 your voltage is high you're using more energy you may have to recharge sooner um and then the strategies are different 1:00:54 you recharge when you need to some people find that it's just easier to recharge every night for 10 or 15 1:01:01 minutes while they're sitting watching the evening news and that way they never forget the beauty of it is it allows 1:01:08 people who for instance you can now travel you can travel to Europe and you don't have to worry about charging on 1:01:13 some weird system even though they have adapters Etc you can go on your week-long vacation if you're topped up 1:01:20 so there are a lot of different it allows people to have a lifestyle that 1:01:26 they could not have before when they had to charge every day and it allows them to go much longer without 1:01:33 um surgery which decreases infection rates and over overall increases quality 1:01:38 of life so I think it's a huge advance to have a generator that does that 1:01:48 um can you remind me again do I need to make an appointment with you or if some someone in your profession through my uh 1:01:56 provider myself so you can just call my office and make an appointment we pretty 1:02:01 much take every Insurance out there there's like one or two like a little little strange ones that are newer that 1:02:07 we may not be on but I'm happy to see anybody obviously if it's if you have a 1:02:13 movement disorder neurologist the best place to go is to start with them and say hey is deep brain stimulation right 1:02:19 for me and it am I at that place and movement disorder neurologists who have 1:02:24 a fellowship in movement disorders they know about DBS like I said it's been around forever they know about it most 1:02:31 of them are big fans and and so they're going to push you but if somebody says I don't think it's for you and you don't 1:02:36 quite quite buy into that it never hurts to to sit down with a surgeon or 1:02:42 you say maybe I'm not quite ready it never hurts I talk to people and say yeah you know it might not be for me but 1:02:47 my doc said I should call you so you can call my office and you can make an appointment with me 1:02:53 I would love it if you have a referral from your neurologist but if you don't that's okay there's lots of people out 1:02:59 there who have Parkinson's that are treated not by neurology and so they're treated by Family Practice and and they 1:03:06 don't know as much not that they're not great docs but they like have to know everything about everything right like 1:03:11 and and so they say I don't know that much about DBS so I'm not sure so I'm 1:03:17 happy to talk to anyone this is my passion this is what I I love to do I do 1:03:22 all the other stuff brain tumors spine surgery Etc I do all of that to allow me to do this thing which is really help 1:03:30 people with movement disorders Parkinson's an essential tremor but Parkinson's talking today live a better 1:03:36 life and so so I'll talk your ear off uh I have to watch myself in the interest 1:03:41 of time right and shut up about it because it's such an amazing life-altering therapy and and it's 1:03:48 something I believe in to the bottom of my heart so call my office make an appointment call call all your movement 1:03:54 disorder neurologists ask them about it your job in life no matter what you do is to be 1:04:01 your own Advocate you've got to speak up for yourself and maybe they'll say uh 1:04:07 you know you're not quite there yet I tell people all the time s not quite the time for you or or this isn't quite 1:04:12 right for you but I'd rather you ask me than get to that point where it's not an 1:04:19 option anymore or I wish I'd done it sooner gosh why didn't I know so 1:04:25 advocate for yourself that's important exactly that we have a question here or 1:04:31 a comment from a guest that says I was diagnosed three months ago my symptoms are still very mild should I wait before 1:04:38 considering DBS so remember we talked about deep brain stimulation and you're 1:04:44 really needing to have a diagnosis for a few years and optimize your medical therapy and ensure that you really have 1:04:51 Parkinson's and all of those things so the best step to do if you have a new diagnosis is number one as they talked 1:04:57 about connect yourself to the community you have so many options in the community young onset Parkinson's early 1:05:04 diagnosis Parkinson's you have support groups you have exercise classes and then really have a good conversation 1:05:10 it's not too early to end up in a movement disorder neurologist's office it's not just folks with moderate to 1:05:17 Advanced Parkinson's that show up in movement disorder neurologist offices start early again advocate for yourself 1:05:24 but it is at this point a little early for deep brain stimulation right I would 1:05:29 I would also add that Boston Scientific has an incredible website dbsnme.com that if you're just starting 1:05:37 to have questions or whatever go on the website and take a look and that'll answer a lot of basic questions that you 1:05:44 might have it certainly doesn't serve as the alternative to an educated doctor's decision or 1:05:51 information but it's certainly a place to start thank you so much and I would remind our 1:05:57 viewers that we do have time for uh some more questions I have about three left here so go ahead and type your question 1:06:05 in the chat box if you unless they've all been answered you know and let us 1:06:10 know if you have some more questions so talk to me a little bit more about 1:06:16 um when is it too late for it to be an effective treatment again it is too late 1:06:22 if medication is no longer effective with the exception of tremor so just Tremor just gets better but when those 1:06:28 medications no longer give you an effect then it is too late so that's that 1:06:34 United Parkinson's disease rating scale updrs motor sub score when you have less 1:06:41 than a 30 percent Improvement irrespective of that Tremor then it may be too late the other one that it is 1:06:48 definitively too late is that moderate to severe dementia that's where we can make things worse and so that's why that 1:06:57 window is so important and that's why we're looking at you know how early is it how safe is it to do early there are 1:07:03 ongoing studies at Vandy and and other places where we're looking at you know is it safe and we within about two years 1:07:11 of diagnosis now some of the the data shows that that may be safe that we've sort of filtered all those other other 1:07:17 things out and it may be safe but it is decidedly too late when Medica when medication doesn't work I'm going to 1:07:24 wait until nothing else works well this won't work either because it's working in that same region and then I'm going 1:07:31 to wait and then somebody develops a dementia um then it's too late and so that's 1:07:37 that's where it's heartbreaking to me because if they come in even six months a year earlier would have been implanted 1:07:43 yes they would have moved on to their their cognitive decline just like everything else however they would then 1:07:50 have the stimulation safely and it would continue to work lifelong 1:07:56 thank you a viewer does ask why uh what do you mean by off hours is the stimulation 1:08:04 turned on for only certain hours per day you leave the stimulation on the whole time what we mean by on and off is is 1:08:13 really referring to medication and so when you're on and your medication is working you have less Tremor you have 1:08:20 less stiffness you have less slowness you are moving better that's considered the on state the off state is where that 1:08:27 medication wears off hence the name off State and that's where you're stiffer 1:08:33 you're slower you have more fatigue you have more Tremor and so deep brain 1:08:39 stimulation doesn't take away all of the off time it reduces It Again by about 1:08:44 49.9 percent as I think the number that was was in the study or adds an 1:08:49 additional 2.8 hours of on time a day so so on off is not about the electricity I 1:08:56 think that can be a little bit confusing right the electricity is on that is stimulating your brain it's really are 1:09:03 you getting a fact and so it relates back to that medication whether whether 1:09:08 it's working or working less but it's always on 24 hours a day seven days a 1:09:14 week I might I might add to that on and off and I think Jim can probably relate to this if you've had Parkinson's 1:09:20 disease for a while you can call it whatever you want but I I can literally tell you the time of day by the way my 1:09:26 body feels um these guys that travel with us on our trip parkings Across America they get 1:09:31 tired of me saying man it's time for me to take my medication because my trimmer starts presenting I'll take my 1:09:37 medication my trimmer goes away and as the disease has progressed my period of 1:09:42 Effectiveness or the on time has a lessened which is common 1:09:47 and I think you could relate to that absolutely absolutely and then riding your bike gives you more 1:09:54 on time right zero question that riding your bike gives you more on time my 1:09:59 trimmer goes away when I ride my bike it's amazing it's incredible how much 1:10:05 exercise and that's the key like so so that's the thing that is so important to 1:10:10 me and and my message to you I'm sure your surgeon told you it really is 1:10:16 you went through the risk which is small and you went through the process 1:10:21 which has been beneficial but now well I wasted get on the bike sure get do yoga 1:10:28 do rock study by boxing go to dance for PD get moving because now you move 1:10:34 better I keep pointing at you like I'm lecturing you to do it but I am that's true I really am like that's the key is 1:10:41 get moving it needs lectured [Laughter] 1:10:46 uh well that's great and I just want to just say one more time Parkinson's 1:10:52 Across America our viewers can take find that Parkinson's acrossamerica.com again PMT 1:10:59 acrossamerica.com Instagram Facebook and Twitter peace PD acrossamerica.com 1:11:04 because these gentlemen are awesome I can't tell you how amazing they are how inspiring they are I want to thank you 1:11:11 from the bottom of my heart for sharing a bit of your story and your day with me today thanks very much to be here thank 1:11:17 you I think we all feel that way we feel very uh blessed to have your your um 1:11:22 your uh knowledge and your expertise in Sharing uh sharing your story with us so 1:11:30 uh I have a couple people that have asked can you have this I guess DBS if 1:11:35 you have a pacemaker yes absolutely oftentimes we'll put it on the opposite 1:11:40 side of the pacemaker it has to be a certain distance away from the other generator so that there's not electrical 1:11:46 crosstalk but absolutely uh if if a person already has a DBS 1:11:54 system can new advances in the technology help them and can you mix 1:12:00 systems you can um you can mix systems so you can take 1:12:06 older leads and put them with newer generators you can take one company's lead and place it with a generator that 1:12:13 might provide some more um uh relief have better programming and 1:12:19 um and so for instance there are there are a lot of of systems out there that 1:12:24 you know I've had DBS for 20 years but I really want this new advance in in 1:12:29 programming I want to be able to do these special things so the next time your generator is up for for replacement 1:12:35 you can swap systems and there are some some surgeons who who find that to be 1:12:41 problematic but many surgeons who are doing that swap because they find that they're getting better results with a 1:12:48 different generator and and so that is something that absolutely can be done the leads are a different story the 1:12:55 leads are the the brain part right and if they're in the right spot and they're not broken what it's not broken you 1:13:01 don't fix you leave the lead in place and then you can play around with the generator which honestly outside of 1:13:08 directional leads or multiple independent current control really the advances the stuff that's going to come 1:13:14 along that we can do with DBS is really going to be at the battery or the generator level so so yes you can 1:13:22 get new generators that are more advanced you can do hybrid systems you 1:13:29 can do some of those things to optimize your outcome because again you got to be 1:13:34 your own Advocate and you got to do what's best for you absolutely 1:13:40 uh we have a couple more questions unless a couple more come in um this first this next to last one is 1:13:48 uh how do you know which device is the best one to use how do you know so some 1:13:54 of that it's it can be a little bit difficult so there ultimately the person 1:13:59 who does your programming is is really more important than the surgeon I can put any device in anywhere 1:14:06 like that's the at the end of the day and I have very strong opinions about which devices uh work best but if I'm 1:14:13 not going to be the person programming it and the person programming it doesn't know how to use the company and there 1:14:19 are three three big companies out there doesn't use that company well then I can put something in but they can't use it I 1:14:26 can do it I can help you but so so some of it is the neurologist who is 1:14:31 typically the programmer most neurosurgeons don't program in their office although I do 1:14:37 um and then the second is um what what characteristics do the devices have and so I think that 1:14:44 segmented leads leads that have a segmentation to them are superior to the 1:14:50 old ring mode leads so without question in Parkinson's a segmented lead is a 1:14:55 lead that needs to happen I feel very strongly that multiple independent current control is 1:15:02 incredibly important so that now I have these segments I can ensure that the 1:15:07 electricity going to these segments is the right electricity the right amount 1:15:13 the right time and then it comes down to what generator qualities are present and 1:15:20 different folks have have different um philosophies I personally find that 1:15:27 being able to to use micc so that multiple independent current control 1:15:32 with a generator that has a very long recharging interval and a lot of 1:15:38 Mobility on the programming is what's best for my patients there are other systems out there that 1:15:46 have other bells and whistles in my opinion I just don't find them to be as helpful and so I am this is not a sales 1:15:56 pitch for Boston Scientific thick but I implant the vast majority of my patients when I am given the choice with Boston 1:16:02 Scientific if I'm not given the choice then I'll implant a neurologist says 1:16:08 this is what I want my patient it's also a conversation with the patient you know you say hey take rechargeable generators 1:16:15 for instance there are some folks who say like I can't even work my flip phone much less like this whole stuff and 1:16:21 recharging or or I go to Africa for like you know I'm in sub-Saharan Africa doing 1:16:28 missions for like three or four months and I need to be able to have this those folks might not want a rechargeable 1:16:33 battery so it's a complex question because it really comes down to what 1:16:38 does your neurologist feel is the best what do you feel is the best what does your surgeon feel is the best and what 1:16:44 criteria and qualities work best for you and your life and and what you have and 1:16:51 and there's a lot of different philosophies out there again I'm not advocating for one company or over another I think it's a conversation at 1:16:58 the end of the day as an ethicist it's a conversation but I've been very clear about sort of what I I tend to implant 1:17:05 in the Parkinson's setting for me the variability in programming 1:17:10 was important and it turns out that that's been the case because my right lead is just outside of the stn on that 1:17:18 side just a little spot and with the image guided technology that Boston Scientific has we've been able to see 1:17:25 how that stimulation can be redirected in a way that hits just that part that's 1:17:32 inside of the stn and I think that that's made the difference in the world 1:17:37 for me so I've been very very happy and I love the rechargeable also because it's a 1:17:43 smaller device and you know I don't know if if you could 1:17:49 feel the larger non-rechargeable one more but certainly I prefer 1:17:55 the rechargeable thank you so 1:18:01 exercise as you'd suggest I walk three miles a day I also do 1:18:08 m-y-m-b-y-l which I'm not sure what that is uh so but um 1:18:15 anyway so I know you've talked about the cycling and the boxing and so are there 1:18:22 any specific um in my mind it's what you enjoy doing and what you're going to get out and do 1:18:28 because it's the the continuity and the the continued activity on it doing 1:18:34 something at least on a daily basis is necessary I feel to make a difference in 1:18:39 in your you know the the really enjoying the benefit of the exercise Scott what do 1:18:47 you know anything I would add to that is um do something that's challenging I mentioned earlier getting your heart 1:18:52 rate up I'm told by all the experts that's important I think 1:19:00 it's easy to fall into the Trap of doing something that's comfortable challenge yourself right I think that's 1:19:06 critically important there is on cycling however there is a ton of data for all kinds of movement 1:19:13 it's getting your heart rate up it's doing something you love so that you'll do it consistently if you say to yourself I would rather shove bamboo 1:19:20 under my fingernails than do X then don't do that just because they say do X pick something else that you love there 1:19:27 are plenty the reason that we keep talking about dance for Parkinson's pedal for Parkinson's Rock Steady boxing 1:19:33 are because these are very specific and they're really well done for folks with 1:19:38 specific issues with Parkinson's like balance dance for PD amazing for balance 1:19:43 right and spectacular and fun but if you hate dancing it's probably not going to be you go to Rocksteady boxing instead 1:19:50 right exactly well said 1:02:14 NOW PLAYING What's New in Parkinson's Treatment? Parkinson's Community Los Angeles 51K views 11 months ago 56:58 NOW PLAYING Integrative Medicine in Parkinson's with Bas Bloem Ending Parkinson's Disease 1K views 3 years ago 43:26 NOW PLAYING The Alarming Rise in Parkinson’s Disease with Dr. Ray Dorsey | The Empowering Neurologist EP. 167 DavidPerlmutterMD 567K views 3 months ago 1:52:47 NOW PLAYING Breakthrough Innovations in Parkinson's Treatment with Cedars-Sinai & UCLA Kensington Senior Living 21K views 6 months ago 48:11 NOW PLAYING Brain Energy, Mitochondria, and Mental Health with Dr. Chris Palmer Metabolic Mind 37K views 11 days ago 56:18 NOW PLAYING The Parkinson's Podcast: Questions and Answers about Parkinson's Davis Phinney Foundation for Parkinson's 890 views 3 days ago New 29:50 NOW PLAYING Economic Update: Corporate Greed VS Labor: The Struggle Intensifies Democracy At Work 16K views 5 days ago New 58:09 NOW PLAYING Parkinson's Medication Management for Motor Symptoms Davis Phinney Foundation for Parkinson's 14K views 3 years ago 41:01 NOW PLAYING The Francis Crick Lecture 2018: Parkinson's disease The Royal Society 5.9K views 4 years ago 1:22:33 NOW PLAYING Understanding Parkinson's Disease | Dr. Melita Petrossian - UCLA Health UCLA Health 63K views 10 years ago 52:36 NOW PLAYING How Britain Started the Arab-Israeli Conflict | Free Documentary History Free Documentary - History 3.3M views 2 years ago 27:57 NOW PLAYING Advanced Therapies for Parkinson's Disease Cleveland Clinic 1.6K views 6 months ago 48:32 NOW PLAYING Treatment of Motor Symptoms in Parkinson's Disease Stanford APDA 648 views 6 months ago 1:12:58 NOW PLAYING Dopamine cell replacement therapies for Parkinson's:- Where are we now by Prof Roger Barker nosilverbullet4pd 10K views 7 months ago 1:38:04 NOW PLAYING Why America's Plan to Contain China Will Fail Cyrus Janssen 314K views Streamed 2 weeks ago 38:14 NOW PLAYING Parkinson's Disease Treatment, Medicine Lecture Symptoms, Tremor Gait (Shuffling, Festinating) USMLE MedNerd - Dr. Waqas Fazal 39K views 9 months ago 36:39 NOW PLAYING Pharmacology for Parkinson's, Alzheimer's and MS Disorders in Nursing Nexus Nursing 8K views 9 months ago 53:54 NOW PLAYING Mitochondria - The Key To Disease and Mental Health with Dr. Martin Picard Metabolic Mind 268K views 1 month ago 1:15:39 NOW PLAYING Reversing a Model of Parkinson's Disease with In Situ Converted Nigral Neurons University of California Television (UCTV) 6.9K views 3 years ago 25:36 NOW PLAYING Parkinson's Disease Symptoms, Treatment, Nursing Care, Pathophysiology NCLEX Review RegisteredNur exactly where we are risk of seizure or stroke all of these are very very small 13:04