"Practical strategies for a happier life with Parkinson's"- an interview with Dr Michael Okun

well hello everyone my name is Michelle thank you very much for joining us today today I'm delighted to host Dr Michael Okun with whom I'm going to discuss practical strategies for a happier life with Parkinson and God knows that we want that Dr Oken is a worldwide recognized leader on Parkinson's disease he's a distinguished professor of Neurology and director of the Norman the Norman fixel Institute for neurological diseases at the University of Florida he The Institute that he co- founded is a One-Stop patient centered clinical research experience for National and international patients Dr Oken has published over 600 peer-reviewed articles and his book Parkinson's treatment 10 secrets to a happier life was translated into Over 20 Languages Parkinson is a very International condition his most recent books are ending Parkinson's disease and living with Parkinson's disease so we are the perfect audience and he is the perfect speaker and Dr Twitter and Instagram so if you're not already following him please consider doing so it is in my view a very effective way to stay on top of all what is happening in the world of research Parkinson's research so as always before we start I would like to remind everyone that this session is for information and education purposes only so if you're seeking medical advice please make sure that you consult a medical professional today's webinar will be limited to 1 hour and depending on the time we might as say we might be able to answer some of your questions after the interview itself so if you want to ask a question please use the Q&A function at the bottom the bottom of your screen do not put the questions on the chat put them on the Q&A please Michael thank you very much for your time today I know you're very very busy person but also a person very generous with with your time for Parkington patients listen it's a pleasure to be with you this morning I've been seeing folks with Parkinson all morning from all over the world and um and so it's great to to be on with you and I understand you folks are in London here this morning and uh we have we actually have a a uh a couple being seen here from Britain as well so I feel feel right at home to be with you today well interestingly 50% of our audience is in the US um indeed 10 10 to 15% are in the UK a similar number for Canada and the rest is all over the world including in Australia and New Zealand where the time zone is not always friendly um so let's get started in your book living with Parkinson's disease you mentioned that Parkinson's disease is not a dead sentence and I agree with that and you say that there is a path to happiness with Parkinson I wanted to ask you for audience what is that path and can we really be happy with Parkinson's yeah so one thing that you may be uh interested to know you know both you and Mark and everybody who's listening is that we've had a number of folks who were diagnosed with Parkinson who tell us that their life is better after the diagnosis than before the diagnosis of Parkinson and so that should be something I think that draws all of our attention second is it's so important to have a plan okay and so it turns out and there's an old story and Matt Stern who's a Parkinson neurologist up in Penn told me the story of the fortune teller who goes to the person and they have a a a group of cards in their hands and and she says choose a card and the guy chooses a card and and and he looks at the card and the card has Parkinson and she says to him she says would you like to keep that card or would you like to put it back in but if you put it back in whatever you pull that's what you're going to get and you're gonna have to keep it person thinks about it and says you know what I think I'm going to keep the Parkinson's card and and I think it's a really nice story because it turns out that with Parkinson once you know what you have once you know that there are lots of different forms of Parkinson lots of different treatments and there's a plan and you can put together a plan and for yourself and for your family and for everyone around you you can actually take a big deep breath make sure you get a good general doctor okay you're taking care of all the other things that you need to take care of and you can live your life because we're all going to pull a card okay we're going to pull a card are going to pull multiple cards okay and so this isn't the worst card that you that you could pull and we we know a whole bunch of folks that um that have the diagnosis that can live a happy life so all of these things are true and you know we have to embrace and we have to help people on their journey and I think one of the things that we must do a better job on is we we must do a better job when we say you have Parkinson's disease okay you say those four words when we do that we really have to deliver the diagnosis not in just a compassionate and empathetic way we need to move Beyond empathy to compassion but also that folks know what that means because most of the time around the world you know even here in the US you know next to where where I live you know people hear that and they even hear that from the doctor and they're like start packing your bags you know start getting your Affairs in order and it really shouldn't be like that and and uh it's not alimer it's not L Garrick's disease no offense to those we also treat those disorders here at the thix cell but there is a path and we've got to help you to get a plan and once we get a plan and you got a team behind you I think that that you'll uh you'll realize that this can be a this can be a moment and inflection point for people's for people's lives that's actually a very good point and um having spoken to many people with Parkinson over the years I find that the experience of the diagnosis is very often a negative one and so your points are absolutely entirely valid and well received so thank you so before moving into the detail of what medications are available a critical question after diagnosis is when is the right time to start taking medication but there might sometimes be a tendency by patients to delay medication so can you please share your views on this yeah so first of all the the most important thing is that we remember that when we talk about a clinician okay that's a person that's seeing you for a particular disease and a person with that disease that is a relationship okay and it's not a one-way relationship it's a it should be a bir directional relationship ship meaning that that I shouldn't make the decision for you it should be shared decision making but at the end of the day when you decide you want to do something that should be the person with the disease making that decision you know for themselves the job here is for us to be like cabinet advisors okay so in the United States you know the president surrounds themselves with cabinet advisors they're there to give advice they can be fired okay you don't have to listen to them but they're just here to give advice that's what your team is they're there to give advice because you're the one that has to go home and figure out what works and what's best for your life and how you're going to integrate these things potentially into their life and whether they fit for you so it's really important okay when we give folks advice that they know that look we're not going to be mad at you we're not going to fire you you're not going to be able to not come back if you don't take our advice I always say tell me what you did because it's the practice of medicine I'm going to probably learn something from you if you did something different and it worked that's how I can learn and so it's a biral relationship with shared decision making having said that here are the the the pearls okay we we talk about the pearls these are the pearls the things that you want to take home whether you should start medicine or not okay Pearl number one okay are you having anything that bothers your quality of life okay could be a Tremor but remember one and five people don't have Tremors Tremor might not bother you at all could be stiffness could be slowness could be walking is there something that's bothering you in your life that's an important point to take into consideration when making that decision second is there anything about the symptoms that you are having okay that are impacting your quality of life and if you're working your ability to work so not just bother some but really beginning to impact quality of life okay quality of existence and ability to work third are you having anything anything about a symptom that is putting you in any danger meaning falling driving anything that might put you into Harm's Way those would be on the sliding scale the way that you think about treatment or at least the way that I think about treatment and so again anything that bothers you anything that might be getting in the way of your quality of life and anything that is disabling particularly with regard to safety having said all of that we now have a whole bunch of evidence not just one study okay one study is one study as you know it sounds a little bit redundant to say that you know but now over the last several decades and one of my jobs has been working as the medical director and the medical advisor for the Parkinson Foundation we have centors of Excellence all over the world and so I look at all sorts of medical evidence and I think you mentioned you know we're on social media we we try to help with advocacy but we've been following this issue of if you take medicine is there this fear you're going to take too soon and somehow that's going to harm you in some way this is a very real thing that people feel okay and um and some people call it levodopa phobia although the the phobia meaning fear I've been uh shared with recently online on Twitter and on Instagram people writing to me saying you know it's probably not the best term because it's not that we're we're fearful of that you know we're just trying to figure out like should we or shouldn't we and is this going to be a good or a bad thing and so labeling people in that way actually was kind of something I think that that I learned that's probably not a term that that it's been a published term but a term we shouldn't use when talking with people here's the straight scoop here's the pearls okay the Pearl is is that we now know both from studies in Italy studies in Africa and now we just got a huge Dutch study that was out called the leap study where they gave people dopamine and then they delayed the start they early dopamine versus delay dopamine and they followed those folks out for now five years no difference in outcome no difference in amount of discinesia no difference in the motor situations going up and down which is what people are worried about and so the evidence keeps showing us over and over that there seems to be no harm okay in taking these medications early and so really it it then comes back down to that equation okay are the symptoms bothering you are they impacting your quality of life are they impacting your safety in any way that's how we think about starting over the years I'm into my third decade treating this disorder Mark and and Mikel Mel you know over the years we uh now um think of this differently we don't we we don't have any hesitation at all to treat people because it can improve their quality of life now we do see folks quite a number of folks that come in who are super smart who are way smarter than we are you know and they they've read a lot of things and they know a lot of things and they've decided I'm not going to take these medications early because I think it's going to cause some sort of harm okay but the data and the years that have been coming in doesn't suggest that and in fact we have a lot of these folks over the years because we remember we don't fire them they don't fire us we just we say look it's your choice it's sh decision- making so what's awesome about that is we actually get to see what happens to them and a lot of them they regret that decision and they regret it because they progressed over that time and they they ended up with all these symptoms that they could have treated that they didn't and so they lost that time that time where they could have been you know those years sometimes where they could have been doing better and so that's kind of the way that we think about it and the pearls that that um that that we we take people through thank you very much this extremely important comments that you just made staying with the uh medications for Moto symptoms um should we be introducing dopamine agonists before levodopa and should we be concerned about the potential side effects of agonists yeah so you know I'll just you know share with you kind of what I know and and the other thing that's really interesting is there's a lot of centers of excellence for Parkinson foundation and for other great foundations all over the world and the practice pattern okay are different in different countries okay and how this is done okay different regions different countries okay there is no right answer okay here okay so if anybody says oh I have the right answer to this yeah they might be fibbing a little bit there is no right answer we have these things available we have medications that go to the dopamine receptor and tickle it okay we call those dopamine agonists and we have medications where we can give dopamine to just replace okay what is the missing dopamine now over the years we have begun to realize when we use dopamine agonists there's about uh 15 16 18 20% let's say 1 in five to 1 and six to make it simple you know 1 and5 to one in six folks that take dopamine Agonist those are the ones that tickle the dopamine receptor can get these impulse control disorders that can be shopping gambling spending lots of money sexual you know prom uity you know doing things you wouldn't normally do maybe eating a lot of carbohydrates so a whole bunch of these things we call impulse control disorders we really weren't aware of them and to be completely honest with you we hurt patients several decades ago when these came out because there was this sort of notion that let's not take dopamine but we can take dopamine Agonist you take the dopamine Agonist we actually ended up causing more harm than good in the in the larger scale for a number of people even with their lives with their relationships with their finances you know and so um so we've taken a humble pill okay on this one Michelle and Mark we've taken a humble pill we've we we take a deep breath and we go back and we say Okay anybody who takes a dopamine Agonist needs to be on a monitoring program what do I mean by a monitoring program what I mean is is that you have to work with your team this can be a doctor it can be a nurse it can be an advanced practice provider like a nurse practitioner that sees you or a physician's assistant you've got to come up with a monitoring plan that allows you if you're going to start a dopamine Agonist that you have a plan again we talked about the importance of having a plan for Parkinson this is a plan for a specific medication in my mind okay we've written about this on our blog on Parkinson secrets.com and in my mind no matter what you do with dopamine Agonist if you don't have a plan when you start it I think that's a mistake and that's something that we've learned the plan needs to be you have to monitor for these symptoms and guess what when you get these symptoms you may not be aware of them okay so you may actually be doing the behavior and feeling really good okay because it kind of makes you feel good the agonists and you're not aware of them so that's why you need a monitoring plan and you need somebody who's going to watch you and Report those symptoms back in and who knows what list of symptoms to watch out for whether you start with an Agonist or whether you start with a levodopa there is no one right answer in general a lot of people used to start with agonists in everybody particularly people under the age of 65 there were different guidelines and different you know non-expert and expert guidelines all that is out the window here's what we know here's the pearls dopamine Agonist have more side effects than dopamine more hallucinations more dizziness when you stand up too fast called orthostasis more problems with these impulse control disorders in straight dopamine so more side effects okay and different types of side effects with the dopamine agonists more of a propensity to get hallucinations but you can get them with regular dopamine as well okay so when we think about those things we think about more side effects for the agonists they're longer acting okay perhaps in some of the younger patients they can tolerate the side effects and they might be able to take a longer acting drug or an extended release or a patch or something like that and be monitored no problem they can be mixed with dopamine as well so you can have a cocktail okay and as you age in general as you get older the agonists become um let's say riskier you can get more of these behavioral features more side effects associated with it so as long as you kind of are thinking in those general terms there's wrong answer okay but have to be willing to monitor it if you're going to be on an Agonist a lot of folks these days at least in the United States a lot of the experts are just going straight to dopamine okay and using The Agonist much less than they used to use them and so they fallen off in Europe the practice pattern is still uh quite a bit of dopamine Agonist that's used and it's kind of a mix in Asia in different different areas and this is just broad strokes and talking to people and we run a study called the Parkinson outcome project where we can look at Parkinson um practice patterns through the foundation across different countries so so that's kind of the way that I think through it thank you very very much now an interesting angle here 40% of people with Parkinson's are women and my question is should we not have a more differentiated approach in dosing medications for men and women if only for the weight the potential weight differences that they might be not even talking about the hormonal differences yeah so here's here's the straight scoop for everyone so Parkinson is more common in men than in women we don't know why that is Alzheimer's is actually the reverse okay kind of interesting right so there are these differences you know that we we have to to think H then you have researchers who have drilled down and published papers looking at differences between men and women you know might be more discinesia and motor fluctuations in some of the women might be different different um some of the different psychiatric symptoms May behave differently when they have their REM sleep behavioral disorder and how you act out your dreams so um so there are fundamentally differences that we don't understand between the two now most of the time in an individual person as we approach the person that's in front of us so if we are a clinician or we're a team and we should have a team around these books with Parkinson treating them we should be paying attention to that specific person and we should be treating toward their symptoms okay and so it shouldn't matter if they're a man or a woman because we should be paying attention to every symptom but we should pay attention to these um these studies that are are telling us hints that there may be differences in diseses there may be differences in brittleness like small amounts of the medication may may actually impact women more maybe differences in body weight some of these things that that are fundamentally important and then one other one that I will just mention to you because I think it's absolutely critical people don't talk about it but it is so important and there I think you know and this is just my personal you know kind of view on this that when you have Parkinson okay if you're a man or if you're a woman you know we know that one of the things one of the factors with whether or not you're going to be successful is your spouse or your care partner okay or the person that's there for you if you're if you are a man okay and you have a woman care partner and you're have a man with Parkinson okay it turns out the women are doing a better job sorry to say it but the women are doing a better job taking care of men with Parkinson than when the situation is flipped okay and we know this from medical data so if you're a woman with Parkinson you have you have challenges and the men are not doing as good of a job you know in caring for you this is super important and I think as we begin to to um to pay attention to these things making sure social support is there more than half of all um persons with Parkinson their Care Partners caretakers spouses more than half are going to score in an impaired way on a validated scale called the multi-dimensional caregiver strain index strain is so high but when you're a woman with Parkinson it is so important for us to be uh gauging what that support system is because the percentages are they're getting less support than men it's not fair but we need to pay attention to it and we need to try to correct it thank you very much um now I wanted to ask you what you think about personalized medicine approaches for Parkinson's there is increasingly more research arguing that Parkinson is not a single illness and that there are various there are different variations of it that should be treated differently would you agree with that yeah so I I 100% agree with this notion uh I agree with the experts including boss Bloom and many others that use the term Parkinson's diseases instead of Parkinson's disease um I would point to the evidence that that they represent when uh when having this argument with other experts and other folks which is that there are many different causes of Parkinson and we don't know all the causes we know that maybe 15% or so maybe 20 if you stretch it you know but probably closer to 15% have a single DNA Gene change that that accounts for their Parkinson disease that means 85% don't you can have multiple different causes of course people are looking a lot at environment you know as being you know risk factors for these things but the reality is is we don't know what caus is all of these different things now there may be common things uh about you know like how the degeneration happen so we end up with very similar symptoms because they're all affecting similar circuits in the brain that we call the basil ganglia these are the circuits that that um that that I've studied since I was a fellow with me dong at Emer University and he taught me all about these um these the these wonderful group of circuits that when they function well they help us to sort uh things in our motor and how we move how we behave how we think but when they're not sorting information well you can get these symptoms and it makes sense to me and it should make sense to everyone that it's possible to have abnormalities in that circuitry and to have Parkinson's diseases and not just one Parkinson disease now why is that important well it's important because if we if we embrace the concept of what we call heterogeneity and heterogeneity means there's a lot of different form Ms and a lot of different symptoms okay if we Embrace that that idea that it's heter heterogeneous then as we develop therapies it becomes important for us to pay attention to what types of symptoms you have what types of markers you might have in your blood your spinal fluid other things that might make you different because it may be that we've been treating this disease and we're not seeing the benefits in everybody but some of the people in the studies are getting washed out and are getting benefits from various approaches and we just don't understand it because it's easy as a human for us to Clump them all together okay and so when we Clump them all together they have similar symptoms but they may be very different and so you're getting at the point of heterogeneity which is one of the greatest challenges in Parkinson and I'll add another challenge to this group is even when we look within genes we may have the same gene okay for Parkinson two people and and you know if Gregor mendle who remember he crossed peas and he helped us to understand the genetics if he were alive he'd probably be turning over you know like backwards his head would be spinning like an owl you know like how can you have the same gene and either not manifest how can you have the same gene and manifest different symptoms how can you have the same gene and and sometimes we see sincan and sometimes we don't and some of these abnormalities the heterogeneity is a real real mystery and it's something that as we begin to develop our understanding and enhance it in Parkinson we're going to have to embrace it and so so it's not a a um in my mind it's not a conversation of will we Embrace personalized medicine or not whether you like that term or not some people think it's a you know it's like one of those cliche terms oh just personalize medicine for everybody I would say the heterogenity whether you believe in personalizing or not the heterogeneity of the disease itself is going to lend itself to us thinking about multiple approaches absolutely thank you very much for this I'd like to focus on non motor symptoms for a second or for a few minutes uh starting perhaps with constipation and urinary issues although I'm wondering if this is not a motor symptom anyway because some muscles are involved so for the first one constipation and and urinary issues are the levels of dopamine in the body having a direct effect on these functions and what have you found was successful in helping with these uh annoying symptoms yeah so uh first of all um you know when we say non-motor symptoms I just want you to know that some scientists including me always get have like a little laugh inside you know it's like it's like because you know you think about it like like who came up with this right so there's motor stiffness slowness motor movements and then we'll call everything else non-motor you know like you know so so it's it's kind of you know you if you if you talk to a psychiatrist they're like so you just call everything non-motor right so we we throw it into that category however it has allowed us as a field to begin to pay attention to them so it's a good thing but I think the specificity of each of these is important and I think that you just highlighted one of the challenges here which is sometimes we call something motor you know or non-motor you know or swallowing or urinary or whatever and there's there's motor aspects to it and there's non-motor aspects to it and so is it really a non-motor symptom so we'll leave that there coming back to the to the urinary so it turns out if you talk to people about what's bothersome about their Parkinson you would think everybody's G to say Tremor right and everybody's GNA say you know shuffling other their feet or you know walking or whatever but a fair number of people large are going to are going to site things like urinary um frequency having to go to the bathroom a lot urinary symptoms and constipation as being like way up there you know and and you know we learned this kind of you know by indirect markers and so in working for the Parkinson Foundation you know I've been I did ask the doctor for many years so we answered 20 or 30,000 you know um you know questions and answers on these web- based forms these old word you know Doss forms for those of you that know programming and dos the questions would come in and we would get a ton of questions on that and then as we got Smarter with our websites we would see that you know like what people were hitting like what people were hitting on the website and what people were asking and even on the fixel website turns out they hit urine and they hit constipation quite frequently because those are symptoms that are like real like they affect a lot of who we are and what we are so so these are real symptoms whether you call them motor or non-motor most people put them in the non-motor category but there can certainly be argued that there are motor dysfunctions that are part of them and when we think about the urinary symptoms I'm just going to bring up a couple of points here for people to be thinking about one don't assume it's always Parkinson but a lot of times it is if you have Parkinson okay two a lot of times we chalk up um the urinary symptoms particularly frequency when I say frequency you got to go to the bathroom a lot a lot of times we chalk that up okay to uh to this being oh there's some problem with the bladder and you know what it is it's wearing off of the medications it's wearing off of the dopamine okay in between and so and that's what's called a non-motor fluctuation another crazy term that you know guess they get paid for this you make up all these terms you Bill for them right so so so they so if your medicine wears off when it wears off some people will get that issue when it wears off some people will get anxiety this is probably the core thing that's missed quite frequently in urinary symptoms Parkinson if you are anxious you're going to pee a lot okay it's like those two things go together it's very common not in everybody but it's very common and if you think about it it's true okay when you get anxious you tend to pee a lot okay it's an autonomic kind of reaction right so in Parkinson one thing that we ignore that we should probably pay more attention to is when people are having urine Ary symptoms one making sure they're not wearing off of their medications because that can cause anxiety and wearing off can also lead to urinary symptoms so making sure move those dosages closer make sure you've got the right dosages and that's why probably some people after DBS or after duopa pumps and things like that and apomorphine pumps feel like that symptom gets somewhat better it's probably because they're on more okay so something to learn from that okay to treat the anxiety much more aggressively and we don't have awesome drugs for anxiety except for improving the wearing off right making sure they're on the right dopaminergics you can give them either serotonin reuptake Inhibitors but if you give too much of those they might get apathetic you can put give them serotonin norepinephrine reuptake Inhibitors these are drugs like venlafaxine or eer and I don't favor any one over another so so no uh there's no no conflict there but um but treating that as aggressively as you can without causing apathy I think is important and then remembering it's not just medications if you tried all of those things there are um some very effective types of physical therapy for urinary symptoms and there's a type of physical therapist that's different okay and most people don't know this so let me just say it out loud because I think it's a good chance for Education when you ask for a physical therapist you can say I just want a physical therapist if you say I just want a physical therapist the most common physical therapist you're going to get assigned is the one that does back pain okay because that's the most common thing go to physical therapist for so you need to say do you have somebody that sees a lot of Parkinson okay or has been trained in Parkinson rarely are they trained in Parkinson but they might have seen a lot the more you see the better chance you have so important second if you're having urinary dysfunction you want a referral to a therapist but you want what's called a pelvic floor therapist okay somebody that is is um trained specific and helping you to do some exercises to get better control of your bladder to kind of get the Zen of the bladder and to work on the motor function around the bladder and people have heard of kagle exercises you know after birth and tightening muscles up and everything so there is a science behind this and there have been some studies in Parkinson and it can be effective and so we close we get rid of the wearing off we treat the anxiety we ask for the right type of therapist which is a pelvic floor therapist okay and then we ask ourselves the really tough question here which is how bad is it okay do I want to treat it enough that I might cause a side effect that I don't want by treating it and the best treatment are drugs that block um the col energic system so there's a chemical in the brain and in the nerve cells that that kind of goes in between so a nerve cell has two areas right it's gonna it's going to have that we call it pre synaptic post synaptic and the synapse is the space between two nerve cells okay so so that space in between is where you end up with a chemical and the chemical is called acetycholine and if we block acetycholine we can help uh people with bladder dysfunction but if we do that we can also cause side effects like constipation and most prominently sometimes Vision but the one we worry the most about is cognition and thinking now there are some types of anticholinergics that are out there that claim there's claims on them that say they have less cognitive dysfunction um not sure you know like like you know we've seen plus and minus certainly go low and go slow if you're going to try it but that is sort of the the last line what we need last Point here what we need is we need a medication that blocks the specific number of The coleric receptors which all have numbers 1 2 3 4 5 that blocks the specific numbers that are going to allow the bladder to not have the frequency issue but will not cause the cognitive dysfunction and so we have to get drug companies interested in that approach and so I think a more targeted approach is is something that's nice and some people when they get DBS and they get duopa and they get pumps and everything with that continuous therapy they notice that their frequency goes down it's probably because they're on more so so take that as a as a hint here take them more frequently try to smooth out as much as you can and think about getting on um so those are the things that that we thank you very much thank you moving on to another uh I'm hesitant to use the word nonmotor but I think it it applies in this case symptom which is bothering a lot of us is sleep and insomnia um can you provide some light on how PD impact sleep and have you come across ways of helping people who suffer from insomnia due to par yeah so um so a couple of really key points here so so I'm getting more seasoned I don't say old to anybody anymore I say more seasoned so I'm getting more seasoned now in my third decade but for for uh you know the better part of 20 plus years at least myself and my practice and many of my colleagues here you know when people wake up in the middle of the night and can't get back to sleep which is so common in Parkinson is really common we've always told them take a dose of your regular you know dopamine or you get up in the middle of the night for the bathroom you can't get back to sleep if you take a dose and you have a dose on the bedside table of whatever maybe you're taking a pill and a half of matar or a pill and a half of cined or a pill and a half of Rari or whatever you're taking two pills of Rari doesn't matter whatever you're taking during the day redose it it's very common at one or two in the morning to get reemergence of symptoms and you can't get back to sleep and when you take that medicine instead of taking a sedative okay like a benzo aspine like valium or aapam you'll go back to sleep this is actually something that's super important what is really cool is that um our lab and and many other labs around the world record out of people's brains okay which what we do for a living we ease drop on on the brain signals and when you ease drop on the brain signals in the human brain during that time of the night there is an oscillation okay where your brain is oscillating and your brain oscillates starts oscillating in the beta oscillation range and a lot of times when you get insomnia and by taking the dopamine in the middle of the night it turns that off it's like a light switch it's like turn the lights back off and you can go back to sleep and when you explain it to people that way they go ah they try it it can be it can be very helpful the other things to think about in sleep is is hygiene totally like undervalued you know is having this discussion you you get like three minutes with your doctor or your nurse practitioner right and so it's like you never have this discussion so let me just mention a few things one unplug from your devices a few hours if you can you know before bed TV um internet um emails texts get off of at Michel oen Twitter accounts get off of that stuff okay like like don't don't read it unplug and relax okay even if you need to have on your iPhone or something put some headphones on they even have you know bedtime headphones that have that have um you know blind holds that go over and the and go onto your ears and you can put on you can even put on different noises pink some people fall asleep to pink pink noise you know that's the frequency of the noise or brown noise or meditations unplug okay before you go to bed super important you will sleep better if you unplug people that watch TV right up until they go to bed don't sleep as well and they don't have good quality second all of these devices and I have multiple look I got a watch I've got a ring you know I've got a I've got a phone you know here okay they a lot of them if not all of them are now monitoring sleep okay and one thing that we know for sure now is is that the total number of hours that you sleep is important okay even even before we start talking about the quality of the sleep okay and and I call it the magic Sleep Number how many hours of sleep can you get a night okay and so if you get like one of these Rings you know where where you get your your you got to charge your device enough so you can wear your watch you know at night some people charge it during the night but make sure it's charged up you know and then put it on and see you really need to be getting seven eight hours of sleep a night and most you know most people in Parkinson when you look at these devices if you wake up in the morning I'm just gonna I'm gonna out myself right now and tell you I got six hours a little more than six hours last night I got po sleep and I'm already a little bit tired today okay so I need to get my eight hours okay I need to get off of Twitter I need to get off of you know you know X and Instagram and everything and so getting the right number of hours of sleep is important and when you start to monitor it with one of these devices you'll be shocked and then you'll see things you know in your behavior you know so so drinking having a drink you know an alcoholic drink before you go to bed can affect this and so improving the quality of your sleep and your sleep hygiene important redosing the medications in the middle of the night important particularly if you wake up and can't get back to sleep okay if you're having insomnia there are also what's called cognitive behavioral therapies with psychologists and licensed clinical social workers to actually help you through that as well so you don't always have to go to medications and then the new kit on the block has been THC uh marijuana and uh and canabo okay and although you'll see a lot of studies that are negative and Parkin in as more studies come out you'll also see across different diseases and disorders these medications good for fatigue and people that need to gain weight or or people that need to sleep and it turns out sleep anxiety and pain are three things that if you can stimulate the cannabinoid receptor in the right way have a a potential to improve okay and so so that can also be something to think about because they may have less side effects than benzidines these are like valium or CL or things like that the other thing is is is that if your doc your nurse practitioner your clinician cannot solve your sleep problem quickly okay if they can't solve your sleep problem quickly you know like with sleep hygiene with other things with a little bit of a medication or something you need to get a sleep study okay and uh we don't prescribe enough sleep studies that's where you go to a Sleep Center you'll sleep at night you'll take a look at it and and then you'll get a sleep expert involved and figure out exactly what's going on almost everybody with Parkinson disease has what's called REM sleep behavior disorder that's when you're moving around and during dream sleep and you're supposed to be completely asleep some people act out their dreams if it becomes violent you can actually if you don't treat that you can actually get injured we've seen a number of really terrible injuries with this sleep apnea that's not breathing you know while you're sleeping can be a huge cause and you may not even know you have it actually one of my colleagues who doesn't have Parkinson disease told me the other day he went into the Sleep Center to sleep he's he's got n the apneas every hour and I'm like no wonder you're tired when you come to work man you know like you could be a much better doctor if you treat that that is extremely common in Parkinson and so so watch your sleep number watch the quality of your sleep try the hygiene unplug redose in the middle of the night with dopamine silk sheets with high thread counts like they call them Egyptian sheets some people say Egyptian sheets I don't know if it's Egyptian or not but silk and things will help you to turn if you're having trouble turning at night sometimes that can be helpful and um and and don't be afraid to bring a sleep dock in oh you're you're muted here I was saying thank you so much for that advice and I'm I'm so happy that you mentioned THC because uh my personal experience has been very positive getting back to normal nights of sleep so thank you for this I would like to switch to a topic that I know is very close to your heart which is DBS um and I'd like to know what are the things we should know about DBS yes if we are considering going down that road is it suitable for everyone what kind of benefits can we expect what potential side effects should we be aware of um I know that you are very big on that topic and the the perfect person to ask an opinion about yeah well let me just tell you that so I try to be as balanced as I can um my laboratory has done a lot of work on neurom modulation and so so I I don't want you to think that that um that I believe everybody should get DBS in fact it's probably in the Parkinson World about one in five people at any you know given time and you think about the lifetime of Parkinson if you're having a lot of off time if you're having a lot of motor fluctuations where you're on and you're off and you're on and you're off if you're getting discinesia extra movements that are bothersome to you if you're getting things that the medications is just getting hard to handle with the medications those are the types of folks that we think about DBS um maybe one in five one in six people might have Tremors and aren't responding or incompletely responding to medications and some people have really terrible discinesia we think about DBS we don't think about DBS which is a brain surgery it's an invasive brain surgery we don't think about it if we have walking talking thinking those types of symptoms we we're not primarily good at those things hopefully yet okay with neurom modulation now you might improve some of them okay if you get improvements in your on state so rarely people will actually say when they're on their thinking gets better that can happen it's rare so so obviously if you get more on time with the DBS you might get benefits sometimes people might say I walk better in my on state so the more on that we get you you might walk better it's not going to restore balance but it might temporarily restore walking but won't stop the disease progression the most important thing for folks to take home about about a surgery is that even though it's a dime size you know hole you know in the skull it's done kind of through virtual reality you know where we're actually kind of Imaging and seeing where things are and and using a lot of technology to get a lead which is like a a straw that pushes out electricity into a very specific part of the brain that it still is a surgery and so you can get infections okay with this because it doesn't have a blood supply you can get strokes if you bang into things that you or touch things that you shouldn't touch on your way down and even though it's small only a few percent it's like um Mark Twain used to say there are lies damn lies and statistics so if you get a side effect you're going to get a side effect having said that for people who have lots of off time lots of onoff fluctuations um uh Tremors that aren't responding discinesia that isn't responding this is a great therapy not everybody needs to okay in their brains okay so that's another thing and not everybody needs subthalamic stimulation there are multiple targets that people people can point at so the most important thing is experience you want to go to a place that has a lot of experience and has a team that can take care of you you want to make sure all the members of the team see you so psych neuros psychologists neurosurgeons neurologist you want to if you have Parkinson they need to give you dopamine it's in the kind of the guidelines now we didn't used to have guidelines but now there are guidelines from the European Association and from the American Academy of Neurology a dopamine challenge test is important and that can help to um to to um facilitate that conversation about what may or may not improve we typically have folks see at least in our Center some rehab Specialists PT speech it's great if you have a social worker okay make sure you're you're taking you're paying attention to the caregiver we talked about the caregiver portion okay and um and then knowing that there's going to be visits back and forth where you're going to have to tune you know this device and tune the medications a couple of pearls once the DB is in it's all about location so you want to make sure you get it to the right location and there are lots of new you know fancy things that can steer current that can listen look at your physiology and everything none of that stuff is going to do any good if it's in the wrong spot okay so it's so important to get the right spot and the multidisciplinary team their job is they're all going to meet together and then they're going to talk behind your back so each one of them will see you they're going to talk behind your back the highest level of healthare you can hope for is when lots of people get together and they talk behind your back okay that's what you want in healthcare maybe you don't want that for your friends and everybody talking about you but in healthcare wouldn't it be wonderful if all the people taking care of you are actually talking to each other they create that plan okay and then they come back to you at shared decision making and say okay you told us you want these three symptoms we can only help two of those okay do you still want the surgery here's the risk and the benefit you told us it's mostly on this side of the body maybe we should just do one because it's going to be half of the half of the the risk maybe you don't need two dbs's maybe you have a specific symptom that can respond but you have another symptom that came up during the screening maybe your thinking was a bit off and there's some risk here so we have to ask ourselves is it worth the tradeoff of doing this and having that shared decision making DBS is still after dopamine the most powerful treatment we have for Parkinson It's a Wonderful treatment it's not for everyone it's like one in five people at any one time and the most important is experience interdisciplinary team and just remembering all the technology in the world is not going to get you out of the problem of not having it in the right spot now the technology last Point here the technology you know is like a sculpture okay so if you make a beautiful sculpture okay that's getting the lead into the right spot you can see almost everything the technology is like ah maybe we you know tweak the eye you know we tweak the side of the mouth or the nose a little bit okay little tweaks on your on your your U maybe your speech or on your walking little tweaks not huge and we're learning this now you know little tweak little tweaks can make a big difference but the main issue is you don't want a team rushing saying well I've got all this technology so you're he'll fix it or she'll fix it when you get back to the clinic no they're not going to fix it you need to get the the right spot and so your team is is still important for that thank you very much we had a few months ago a presentation by Dr rul Martinez from Spain about focused ultrasound and I wondered if you could just give us your opinion about that as a less invasive alternative to DBS but of course there are some downsides that DBS doesn't have as well yeah so I mean I think again it's all shared decision making you know you think about all the different procedures and things and you want to sit down with a person and see who is that person what do they need and what is best for them that that should be where we where we always start and where we always finish now when we think about focused ultr sound this is a way that you can make a lesion a hole in the brain okay now we do this we still do this with regular lesion probe so if we map the brain out for DBS and we're sticking it in if we stick a probe in and we heat the end of that probe up we can make a lesion okay we called that palad doomy or thalamotomy you know or subthalamotomy depending on which Target it is so if it's the globous paladis it's palad doomy if it's the thalamus and that's good for Tremor it's the it's the um it's a called a thalamotomy if it's a subthalamus it's called a subthalamotomy the thing that we learned about lesions over the years is that they're very effective when they're made large enough they have to get enough of the brain tissue enough cubic millimeters of the brain tissue in order to make a difference you don't have to you don't have to um change you know you don't have to program them there's nothing programmable but but you're stuck with that lesion so if the lesion you know gets into the motor system or gets into an area that you don't want you may be stuck with that side effect long term okay so there's there is that plus minus and then there's a question when you do lesions on two sides of the brain whether you get more side effects and there's a a long history of this although there's a recent paper out a small series looking at this en Thalamus and starting to revisit this and people may be making smaller more accurate lesions and we might be able to get away with this in the modern era but when benabid and those guys did early DBS there were lesions on one side of the brain and then they put the the DBS on the other side there was a reason why the field moved to DBS so um so as we go we may end up back doing lesions you can do lesions in countries who can't afford the hardware you don't have to have as much uh back and forth what's the downside to making a lesion with focused ultrasound well one it comes from outside the brain anytime you're further from your target okay if you just think about this there's going to be less accuracy okay you're going to you're going to be pushing sound waves in to make that lesion exactly where you want it so the temporal resolution which is sort of another big word for accuracy in these small targets is going to be less the way the shape of of what you can do from outside the brain is far less good than if you're inside the brain if I'm inside the brain I can make a whole bunch of holes I can shape them I can make triangles we used to have this joke when I was at Emory um that um that you could tell like we had made the leion this was Jerry VC and Meen dong you could tell when they had the leion and it's true because I could like I get a patient now and I they've had a lesion many years ago at Emory and uh and I can tell who made the lesion it's like a it's the tailor you know like like you could tell the clothes that you see on the person you know there's a because you can actually shape it you can't really do that that well with these other therapies the lesions are a bit smaller and um and you know so there are less infections less programming but less temporal resolution question about two sides um certainly people who um who can't have open surgery because they on blood thinners or they have cognitive dysfunction or anything this could be an ideal you know type of therapy for them you do have to shave the head you don't necessarily have to shave the head for DBS and then we ask the question will this be good for some other people and I think that's the question that R Martinez and Joo baso and um and there's a group from University of Maryland and uh bbor Krishna and others have been asking this question and I think it's a legitimate question to ask you know safety long-term efficy efficacy you know how effective it will be shortterm versus long-term who gets it you know in what circumstance and um and then there's the question of technology and so once you make a lesion you're kind of done and so the DBS does allow you the opportunity to be able to tune that up okay and make changes over time so uh so I I think that um it's uh it's super important to to be thinking about these things and there are again I come back to this issue practice of medicine is a practice of medicine every day I practice medicine I know a little less it's very humbling and so I think we have to stay open to all of these types of Technologies so we have a focus ultrasound machine at the University of Florida we have DB we can make oldfashioned tailored lesions like I talked about we have pumps we have all sorts of things and we think you know we don't think about you have to have this because this is the research I do in my laboratory the question is is who are you what do you need what's going to be the safest you know um thing for you that's going to provide you the most benefit and then you have to make that decision with the risk benefit because it's shared decision-making at the end of the day we have to be compassionate enough to embrace what what folks need and want thank you very much I would I would like to stick with to stay with technology for a few minutes and in particular to talk about stem cell therapies now there were a few uh quite public releases of information about a Swedish man having been injected 7 million cells etc etc so my question is really can we trust that technology therapy in its current state of development or is it still just research in and to put it the way I think you you put it in your book asking the question has the hype outpaced The Hope or should we be wary of Sten cell tourism at this stage yeah so the answer is yes to all your questions and um but it doesn't mean that we shouldn't have hope for the different technology here's what we've learned okay we've learned that we can take a skin cell and we can turn it into a dopamine cell right or we can take one cell turn just mind blowing I mean awesome right you know like I mean this is really cool right so I think that that you know what we can do now is terrific we've learned that you can take those stem cells for certain types of of cancers and they can be very effective for treatments we've learned that you can take those those cells that you manufacture you can put them into the brains of people with Parkinson disease and they will live pretty interesting they will make connections pretty interesting some people will improve with them we've learned some of the people that got them got extra disas called Runaway disas pretty interesting you know we even saw just this week with the gdnf a long term of people who hadn't been infused with gdnf there's a paper in a journal called movement disorders we saw the pathology for somebody 45 minutes okay after that okay and um and and I think that that was super important you know to see you know what the brain you know what happened and that it was living in that area what we haven't been able to do with any of these therapies is to regenerate this complex circuitry and stop the the progression of Parkinson disease okay so I think we should be very humble when we think about this there's been a lot of money that's been raised over the last 20 years you know about oh this is going to cure it in five years this is going to stem cells is it and there isn't one therapy in Parkinson that has garnered more hope than stem cells and I don't know if you know vaccines or something else is going to knock it off its pedestal but think about it every disease probably has something that people are most hopeful on on a scale right this is just the the the thing that we are you know as a group have been most hopeful for it's been great for drug screening it's been great for uh for helping us devise things in the laboratory okay to understand Parkinson it may actually be great for combining with Gene therapies and Gene editing and some of the other strategies and thinking in combination therapies but at this moment as a treatment the hype has outpaced the hope okay in there and we should be careful and when it we have recommendations through the Parkinson Foundation that if you're considering stem cell therapy you should always ask for the informed consent ask for the protocol and show it to your doctors and show it to somebody that you trust to look at it should be research you shouldn't be getting charged for it because they don't know if it's going to work right and we also know that people both through the Food and Drug Administration in the US but also throughout the world reports we used to say ah well you could get it and you could mortgage your house and you could lose all this money and everything we're obviously worried about that but it's probably not going to hurt you we used to say that we no longer say that anymore because now we've seen people get tumors we've seen people get side effects we've seen people lose their Vision so there can be you know consequences of being infused with these types of therapies a lot of times the infusions that go into the arm you know into your veins don't get into the brain also and even if they did that might be good news that they're not getting into the brain depending on what are so um I direct people there is a great um investigative reporter named Laura Beal and she has a um a a um a series that she recorded called bad batch and it's about stem cells and stem cell tourism and how many thousands of places there are that is available and I talked to Laura after I listened to the her podcast because she was talking about the Parkinson foundation and the guidelines and everything and so I I've had a few discussions with her um and um and I really like what she put together and she was curious about it because her father has Parkinson and he wanted to get a simpo you know transplant I mean and there's so many people that are in that situation and so I tell people listen to that I think it's it's very useful to be thinking of things in that way and then if you've seen the the news um I was quoted recently in the news on the Aussie Osborne story um and he has gone public here recently talking about how he's not sure you know like what he would be like if he did or didn't get this and didn't or didn't get the stem cell thing which I think is a great I mean it's great when people are willing to just talk about it you know and and um and I and I just congratulate him for doing that I think it's really important for people to know and then he's talking about the non-motor symptoms the depression and other Neuropsychiatric features and how hard it is and and what his struggles are like and I I just think it's really useful for people see he's still struggling he doesn't know whether he's any better or any worse and in this case he's in a very reputable Center they're doing research they have an Institutional review board they have it you know thing so if you go on to clinical trials.gov that's where most of the the um the trials are registered you can see they're registered up there but there are also trials that are stem cell tourism that charge you money you know for them that are registered on clinical trials.gov and so get the consents talk about them the Parkinson Foundation has a list of things you should watch out for if you're considering these therapies and um and you know and and you know God willing we hope regenerative medicine is going to is going to help uh help out and we may also see a shift there was a great paper by Roger Barker and uh Parker and um and Andre Borland um recently in a journal called brain talking about the basil forbrain and memory dysfunction and doing some regenerative medicine on those circuits and that could be super useful for Parkinson and and um so I mean I just think some of these people are doing fantastic work and we've got to we've got to embrace all angles you know here and be thinking about it thank you very much Michael we have run out of time but would you have an extra five minutes for my two last questions I know you you need to see someti let go fast here I'm in clinic today so so I need to get to the folks who are waiting but let's why don't you you give me the blitz we have a blitz session here what are your two last the the first one is that I think that we I I wouldn't want to miss the opportunity to ask you whether you think that medication will be able to cure or slow down the progression of Parkinson's disease in the foreseeable future so uh cure I'm always uh careful about that I think of three buckets I think of the symptomatic therapy bucket I think of the slowing disease progression bucket we're going to see disease slowing a progression like we're starting to see in Alzheimer's disease it's a matter of magnitude of of of of effects that we'll see the C bucket is the last bucket the bucket and I like to turn the C bucket into the P bucket so and call it personalized medicine bucket so depending on what type of Parkinson you have we will uh we will attack it cure is a very very charged word uh there's a lot of historical context to it I think we have to be careful how we use that um I think we can come up with you know therapies that are going to slow diseases down and potentially you know get you to the next level but remember even with Cancers when we hit the cure there's often a price for it with radiation or chemo or other things and so there's going to be opportunities for specific genes like the park and Gene that I think will get us very close you know there so I'm optimistic thank you and very last question is not even a question it is more what would be your your advice to your audience your message to the 300 people who joined us today and to the many thousands who will be watching this recording on YouTube in the coming weeks so you know I'm very optimistic about what is happening with Parkinson excuse me so Ray dorsy and I and Boston Bloom Todd Sherer had written a book you know Parkinson ending Parkinson disease of prescription for Action Ray and I are working on a on a on a follow-up book about prevention and about treatments and been interviewing a lot of people from all over the world so thank you if anybody's watching that has spent an hour with me or two hours with me to interview I'm very optimistic I think we need a plan I think each individual person needs a plan for their Parkinson and you need to be dynamic and change that plan over time and you can be successful you can lead a happy life but I think as a field we need to converge get the right amount of resources in have a plan you know almost like a mutual fund how we're going to invest things and move forward and move with uh with some deliberate purpose and meaning and drive you know to to Really um to really getting a hold of uh of the Parkinson you know challenge which is you know the fastest growing neurod degenerative disease on the planet so I'm optimistic but I'm also motivated that we need to we need to move on this thank you Michael thank you for your time today and indeed thank you for all what you do every day of your life for the the 30 Years also for for us living with Parkinson's and for people who support us thank you so much and thank you to audience for joining us so many today it's a pleasure and an honor to be with you everyone you know have a a great uh a great life try to try to do everything you can to to live a great and meaningful life and if we can be of any help to you you know let us know we have some great conversations on social media many of us and so thank you for that and thank you for teaching me so much uh over the years so we all we learn from you so so keep inspiring and um and and and we'll keep working in the background thank you very very much and have a good afternoon take care M bye bye

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Length: 65min 25sec (3925 seconds)

Published: Tue May 14 2024