00:13this lecture is being brought to you in
00:15part by the generous Gifts of these
00:20sponsors well thank you so much such a
00:23kind uh introduction and it is uh
00:26wonderful to be back so I have been on
00:29this stage before for and ihmc is such a
00:32a great organization and I've also
00:34spoken here and spoken in Pensacola over
00:37the years and so I just want to shout
00:39out because not too far down the road
00:42here you know we're um at the University
00:44of Florida and so it's great to actually
00:47be in front of a home audience and and
00:50you know hopefully we can have a little
00:52bit of fun tonight uh talking about a
00:56topic that I think is something that
00:58becomes more important
01:00you know as you get more seasoned and so
01:03as a as a treating physician I always
01:06tell people you know never say you're
01:09getting older getting more seasoned okay
01:13so as we get more seasoned okay as we
01:19seasoned we are going to be facing this
01:23challenge a real Public Health Challenge
01:26so not just a a research challenge not
01:28just a care challenge a real Public
01:31Health Challenge about diseases like
01:35Parkinson's and so a number of years ago
01:39um I got together with a few buddies Ray
01:42dorsy and bosan Bloom who are way taller
01:45than me okay and way smarter than me and
01:49we began to think about the construct of
01:54what would it take to end a disease what
01:58would be the prescription for
02:02action and what I want to share with you
02:04tonight is much of what we learned on
02:08that Journey okay and the journey is
02:12really a we journey it's a together
02:15Journey it's not a me Journey okay
02:18shortest poem in history written by
02:21Muhammad Ali had Parkinson disease you
02:24remember me we shortest poem in history
02:27look it up in bartletts okay but the
02:30journey here needs to
02:33be about we this road that we need to
02:37take together and so we're going to talk
02:39about that tonight and I I think it's
02:41going to be a lot of fun and uh and so
02:44hopefully we'll uh we'll hit a whole
02:46bunch of points and what I really want
02:49to do is challenge you I want you to
02:53reimagine I want you to
02:55rethink I want you to put yourself in a
02:58in a different frame of of mind okay so
03:01you remember many of you may have seen a
03:03movie called Dead Poet Society you
03:05remember in Dead Poet Society you know
03:08do you remember when the kid gets up on
03:10the table okay because the teacher says
03:12you got to see things from a different
03:14perspective you got to see things in a
03:15different way this project on ending
03:19Parkinson and a prescription for Action
03:21is all about that it's all about let's
03:24step back and see this in a different
03:27way in a different strategy in a
03:31journey and for me part of the journey
03:35is how we characterize healthc care and
03:37I don't want to uh Cherry coat things
03:40and I don't want to shock anybody but um
03:43but the American Healthcare System may
03:44be a little bit broken okay I know I
03:47know it's hard to you know it's hard for
03:49you to accept that but it may be a
03:52broken but we have always said that the
03:56best way to give healthc care is to put
03:59the person with the disease in the
04:01center and to orbit around them whether
04:03you're doing clinical whether you're
04:05doing research whether you're doing
04:06advocacy it's the person that you have
04:08to listen to that has that and that
04:11drives everything that we do and and
04:14that has been the one founding
04:17philosophy so Ken Ford told me he was a
04:20philosophy major which I love okay and
04:22and it's a it's a founding Philosophy
04:25for us when we put together our Center
04:27which became the fixel at the University
04:30of Florida and so this idea that you
04:33have the sun and the Sun is the person
04:35with the disease is so important
04:38especially in the Health Care system
04:39that we live in now where you're just
04:41trying to get an appointment maybe even
04:43get some parking you know see one person
04:45could you imagine actually seeing a team
04:47of people so this sun can light the way
04:52but it's the vision that is going to
04:54help us to pave that road forward in
04:57Parkinson and in other diseases and so
05:00that was sort of the the journey that
05:02Kelly foot who co-founded The fixl
05:04Institute with me 22 years ago and I met
05:08somebody that I had seen their husband
05:10many years ago and uh and and she was
05:12kind enough to to to say to me boy you
05:15were you were much younger then I wasn't
05:18sure if I should if I should trust what
05:20you have to say but um but it turns out
05:24that um that when you think about this
05:27journey you've got to be grounded in
05:30philosophy and I think part of that
05:31philosophy helps us on the road and we
05:34have to ask ourselves what's your why
05:37like why do you do things and so for me
05:41the why is you know how is it possible
05:44for a guy like this me look at these
05:46feet okay look at these feet in Muhammad
05:48Ali how is it possible this is
05:501966 okay how is it possible that you
05:54can have that kind of coordination
05:56between the two sides of your body and
06:00this you know amazing and then you get a
06:03disease that robs you of that what's
06:06what is what is that why does that
06:08happen and so for me in my life part of
06:10my why was listening to people part of
06:12my why was looking at people with these
06:15different disorders and saying what's
06:17going on in the brain what's causing
06:19these disorders so I think it's
06:21important for us to have a why okay a
06:24why moment and many of you may have seen
06:27this movie okay called Awakenings right
06:31Williams right he he drops the the
06:36glasses and the woman who's completely
06:39Frozen this is before dopamine okay and
06:41he's playing the part of the Doctor
06:43Oliver Sachs and teaching the the the
06:46students here what he sees comes
06:48unfrozen and can catch the
06:50ball why that's incredible I mean you
06:54think about this disease what's going on
06:57in the brain to activate this and we
06:59think think about before leave aopa
07:01after dopamine replacement for Parkinson
07:04before surgeries that we've been
07:06involved with with understanding these
07:07circuits and after the care of these
07:10people this this disease that we're
07:12going to talk about tonight is a is is a
07:14mysterious disease and we're still
07:16struggling to try to understand it but
07:18it's also pretty amazing too okay and so
07:23when we think about the why of a disease
07:26like Parkinson this is a video shared
07:29with me from Boston Bloom who's in the
07:31Netherlands and he was a co-author on
07:32the book ending Parkinson's disease and
07:35I remember early on in my career when I
07:37was at Emory there was a woman who
07:40couldn't walk but she could dance with
07:41me okay here's a man in the Netherlands
07:45you know they tend to ride bikes there
07:46he can't walk you saw him Frozen in the
07:49clinic and you put him on a bike and he
07:53just takes off now of course when Boston
07:56Bloom published this in the New England
07:58Journal of Medicine you know you know
07:59the biggest critique that he got why
08:01didn't you put a helmet on the
08:03guy okay the poor guy turns out helmets
08:08not mandated in the Netherlands so he
08:11had a pretty good excuse for it but you
08:13see you know this incredible like why
08:16this is a really interesting and many
08:18people live with this disease for
08:21decades and it's not one disease it's a
08:23it's a bunch of different diseases that
08:25we're trying to understand why some
08:26people do better why some people do a
08:28little bit worse why these treatments
08:30work what can we do to develop a
08:32treatment that's more specific for an
08:34individual person and you see him hop
08:36off the bike and he goes back to being
08:38frozen again okay and so when we think
08:41about Parkinson's okay back in
08:452013 we wrote a book for the foundation
08:48called 10 secrets to a happier life and
08:50the book took on a a a bit of a of a
08:54life of its own and it was humbling to
08:56me because I had written so many
08:58research papers that no nobody had ever
09:00read okay and then I wrote this book and
09:03everybody read this this book and it had
09:05you know just 10 things that to me
09:07seemed obvious from all the folks that
09:10we had seen from all over the world we
09:11see patients from every continent people
09:13with disease from every continent except
09:15for Antarctica and we learn those things
09:17and we reflect them back and sometimes
09:19the simple things we don't appreciate
09:22but in that book I I quipped in the book
09:26that we are approaching a Parkinson
09:28pandemic this was in
09:292013 okay a number of years ago and when
09:33you think about pandemic pan means all
09:35deos means people okay if you think of
09:37the Latin translation pandemics the word
09:42generally reserved for infectious
09:45diseases okay and I think that's a good
09:47idea to do that but it really wasn't
09:50historically just for infectious
09:52diseases right and it turns out that on
09:54every continent this disease is growing
09:57and it's growing at an alarming rate
10:00okay and so we took a time out we took a
10:03pause and we said you know what's going
10:05on with this disease why is it growing
10:08and what can we do about it you know
10:10because we don't want to pass this on to
10:11the next Generations forward right and
10:15so how big is that challenge well we sat
10:18on a number of committees one of which
10:19was with the World Health Organization
10:21and Ray dorsy sat on another committee
10:23looking at the global burden of disease
10:25and it turns out that it's not stroke
10:28it's not brain tumors it's Parkinson's
10:31Parkinson's is the fastest growing
10:33neurological disease even faster than
10:35Alzheimer's disease there might be more
10:37Alzheimer's but Parkinson is growing
10:40faster okay and why you have to ask why
10:44why do we care well one in 15 people
10:48predominantly men okay predominantly men
10:51but not just men but one in 15 people
10:54are going to get Parkinson in a lifetime
10:56so if you sat in a classroom when you
10:58were were a child and you had about 30
11:00kids in the classroom before things were
11:02overcrowded right it was about 20 30
11:04kids two of those people are going to
11:06get Parkinson so most of you that are
11:08sitting here you know probably know a
11:11couple of people you went to school with
11:13who had Parkinson and that's that is
11:15growing that number is growing and it
11:18hasn't set off the alarm bells that it
11:21should set off and so Ray dorsy is
11:24really good at at making charts and
11:27studying these things and he made this
11:29this chart that I think really brings
11:32home the point okay you don't even need
11:35to see the numbers on this okay there
11:39are three columns here the one on the
11:42left is 1990 under 3 million people with
11:45Parkinson 2015 6.3 million projections
11:50for 2040 12.9 million that's more than
11:53doubling okay the amount of Parkinson
11:56that's going to be on the planet
11:59in many of these estimations don't even
12:02account for young people with Parkinson
12:04and I have people in my practice that
12:05have Parkinson in their teens or 20s
12:09okay so this is really something that
12:11should be setting off alarm Bells we
12:13should be saying wait a minute what is
12:16going on here okay and if you think
12:19about what's the greatest innovation in
12:23the last 100 years okay Ken Ford might
12:27tell you it's some of the robotics that
12:28he had and he does have cool robotics
12:30okay there's no doubt about that but
12:33it's probably the doubling of the
12:34lifespan and you can look up these
12:36charts or there's so many of them on the
12:38Internet you can look them up they all
12:40say about the same thing that the
12:42lifespan has doubled okay literally
12:44doubled since the mid
12:471800s so if we're living longer then we
12:50should just get more Parkinson right
12:52okay but it turns out we looked at the
12:54data and it cannot be
12:56explained just by the fact that we're
12:59living longer okay so we can't just
13:01explain that away and so we have to
13:03think about what is the path forward and
13:06so what we did is we got together and we
13:10said how about other diseases how about
13:13other areas where people have studied
13:16and said you know what's going on and
13:17what did it take to get to the to end a
13:20disease and so we looked at
13:22HIV okay we looked at various cancers we
13:25looked at polio okay this was before the
13:28pandemic polio has been talked a lot
13:29about now because of covid-19 okay and
13:34we started to research the different
13:36diseases and as we assembled all this
13:40with all the interviews and research for
13:41this book we realized that the formula
13:45is simple and we called it the PCT to
13:48end a disease you have to P for prevent
13:51a for Advocate C for care and T for
13:53develop new treatments that is the
13:56formula that drives forward and there
13:58are certain factors that you can do to
14:00catalyze when we say catalyze we mean
14:02make it go faster but that's the formula
14:05okay and you can see this is one of the
14:07advocacy efforts that we had as part of
14:09that book and it was called a give a
14:12dime campaign and it was modeled after
14:15the March of Dimes where people used to
14:19mail dimes to the White House and we
14:21said oh okay well we'll just have them
14:22mail dimonds to the White House it turns
14:23out we had to scra scrap that idea does
14:27anybody know why it's now illegal to
14:30mail uh you know tender to the White
14:33House because so many dimes and so much
14:35they overwhelmed the guy named Irving
14:37who ran the mail ring during this time
14:40and they overwhelmed the mail room with
14:42this and so this idea of sending out
14:46tens of thousands of cards to advocate
14:49for things like Banning certain
14:50pesticides like paraquat okay that we
14:53keep doubling and making sure that tele
14:56medicine stays available even when Co
14:59goes away which it didn't okay and
15:04making sure that we figure out how much
15:06money we need to push into Parkinson to
15:09make that change based on the
15:10experiences of what we had seen in other
15:12diseases so here's a couple of my
15:14co-authors you can tell immediately
15:16there's a big difference between
15:19us not just in intelligence okay but um
15:24but any place that we could smile
15:26anybody who would listen to us us we had
15:29a Booker T Washington type of get out
15:31you know and walk the nation walk the
15:34world and here we are in Barcelona just
15:36trying to get the word out to as many
15:38people as we can and you may have
15:42noticed that in addition to the healthc
15:44care system not always working optimally
15:47we've been over that
15:48point that we don't seem to be able to
15:52agree on things in Congress okay I know
15:55shock okay I know you're all shocked
15:57okay but recently on December
16:0014th there's an act that name is almost
16:04the same name as the book okay that was
16:06represented by Gus bakus from Florida
16:09and and uh representative Paul tonko
16:11from New York that passed at 409 almost
16:15unanimous through the house the national
16:17plan and Parkinson's act and that will
16:19be headed to the Senate and it's looking
16:22good you know like in the Senate and so
16:24these are the things that are going to
16:26make a difference okay and how we're
16:29going to to to push in and that's the a
16:32the advocacy to change things but it's
16:35important for people to understand like
16:37the why like why are we doing this
16:39because this is something we don't want
16:41to pass generation to generation and
16:43things where we can reduce the number of
16:45cases that we're seeing and hopefully
16:48push you know to a better Horizon okay
16:52now when we put out thank you when we
16:55put out the ending Parkinson disease
16:57book the other really incredible thing
17:00that happened was there was a group of
17:03people that were folks who had Parkinson
17:08and they formed an organization and it
17:10was called the Parkinson disease
17:11Avengers the PD Avengers have you ever
17:13heard of that's like the capes and
17:14everything and now there are thousands
17:16of them that have kind of rallied around
17:19this Grassroots effort lesson it isn't a
17:23person that's going to change this and
17:25we know this from polio we know this
17:26from HIV it's a movement
17:28it isn't a person it's a movement okay
17:31and so the movement goes on and so we
17:34think about prevent Advocate care and
17:37treat when I was uh testing the talk
17:40earlier today Gordon who is a great um
17:43uh a specialist here caught this slide
17:47like literally as I went past it really
17:49quickly and he said oh are those super
17:51fun sites and I said wow yes they are
17:54super fun sites and he said you know
17:58this organization ihmc they're on a
18:01super fun site in you know close to a
18:03lot of them in Pensacola and there's a
18:05lot of them here and if you look at
18:07these purple spots he's absolutely right
18:10okay and I always say where do you live
18:12okay super fund sites what are they okay
18:15what is Gordon talking about how did why
18:17why is he concerned about that that's
18:19where something has gotten into the
18:20environment that the American system has
18:23said we need to clean this up because
18:25it's going to probably cause disease or
18:27something bad is going to happen now of
18:31course you probably realize that there
18:32are a lot of these sites and I know it's
18:34going to shock everybody third shocking
18:36thing of the night okay that some of
18:38these sites many of these sites most of
18:40these sites haven't been completely
18:41cleaned up okay but where you
18:45live is something that's becoming very
18:47important for degenerative diseases like
18:50Parkinson disease okay where you live is
18:53very important so I often say where
18:55where do I live well my favorite
18:57pizzeria in uh Gainesville I won't say
18:59which one it is because I don't want to
19:00hurt their business sits on a super fund
19:03site okay I'm not going to stop going
19:04there but I'm I'm I'm gonna maybe I'm
19:06going to take it as takeout right so so
19:09exposure and knowing you know like
19:11what's been there and you see you know
19:14lots of things and Ray dorsy this is one
19:16of the things he does for a living goes
19:17around the country and and checks kind
19:19of like Aaron Brockovich what's going on
19:21and and overlays these Maps as to where
19:24things are happening and investigates
19:26these things this is a a story of
19:28tricoro ethylate okay this is a chemical
19:32that's common in dry cleaning okay and
19:35it turns out that this chemical can get
19:37into the ground on spills and it can
19:39vaporize and it can come up like even
19:41from your home so you could be on top of
19:43a of a vapor fume you know from this and
19:45so you're not completely protected and
19:48so you all have been um let's just say
19:52overrun with these commercials about
19:55Camp leun okay on TV and none of the
19:58authors of our book have testify in any
20:01of these cases they all want us to
20:03because a lot of what we wrote you know
20:06may have sparked you know this sort of
20:09movement you know as to as to these
20:11chemicals or contributed to it and this
20:15paper appeared in one of the Journal of
20:17the American Medical Association um
20:19sub-journals called J neurology an
20:21excellent Journal showing the risk was
20:2370% higher in people who lived in Camp
20:25leun okay from this contamination
20:28of tce in the water okay so we have to
20:32prevent Parkinson so we have to ask
20:35questions they're not hard they're not
20:37hard folks do you know the chemicals and
20:39pesticides to avoid do you pay attention
20:41to where you live and where you spend
20:43time do you use air filters apps are you
20:46supporting bands you know to try to get
20:49these things off the market and out you
20:51know of you know where you might get
20:54exposed and we look at certain
20:56pesticides like paraqua which was on our
20:59campaign our red card campaign we sent
21:04paraquat literally doubled in the last
21:0710 years okay here in the United States
21:10okay 32 countries abandoned including
21:15UK they didn't ban it they banned it for
21:18their people and they ship it here for
21:20our people okay and so you know we we're
21:24been part of an amicus brief to have the
21:26EPA kind of go back and look at this
21:30successfully and also in tce and so Ray
21:32dorsy and the group have been really
21:35absolutely terrific at at at this story
21:39this story is such an important story so
21:42p is prevent a is Advocate and one thing
21:46that you learn if you study other
21:48diseases is it does help to have
21:52Advocates that are well known okay and
21:56so here's a picture of FDR with Eddie
21:58caner who ran a radio show you know very
22:01famous radio show and they literally
22:05created the the hereditary Foundation um
22:09for paraplegia spasticity polio and
22:14drove they drove so much awareness and
22:18so much money into this problem that it
22:26savementa wasn't an easy road but it was
22:30catalyzed catalyzed so I use that word
22:32catalyzed catalyzed means when you have
22:34a reaction and you're a scientist it's
22:36going to happen and you're going to
22:37speed it up do we want the reaction to
22:39happen in 200 years from now or do we
22:42want it to happen now so we have to
22:44think about how you speed it up here's a
22:46great story picture of HIV okay in HIV
22:52the advocacy efforts included quilts on
22:54the National Mall they included putting
22:58on Jesse Holmes's house okay which was
23:02very effective okay very effective it
23:04says a condom to stop unsafe politics
23:07Helms is deadlier than a virus
23:10okay and he never voted against the HIV
23:14legislation okay FDA stins here okay and
23:19they increase the amount the number of
23:22dollars that went into HIV by more than
23:25tfold and they drove this to when I was
23:28an intern when I started medicine and I
23:30was a general doctor on the wards we had
23:33literally HIV and AIDS ws and it was it
23:37was almost a death sentence when you got
23:39this disease to now a chronic livable
23:42condition okay there's something to be
23:45learned from that and what that lesson
23:49taught us so prevent Advocate see care
23:54this is really important because a lot
23:56of organizations forget
23:58you've got a tremendous number of people
24:01who have this disease now today okay and
24:05guess what this is the old-fashioned
24:07picture you see the old sketch from 1888
24:101886 from William Go's textbook this is
24:14how people think of Parkinson many of
24:15you here tonight have Parkinson you
24:17don't look like this this is the old
24:20image and so meliss Armstrong at the
24:22University of Florida has redrawn
24:24reimagined Parkinson young people can
24:26have it women can have it men can have
24:28it and not everybody has that same
24:31progression there are 90,000 cases of
24:34Parkinson disease now per year and
24:38growing and increasing and we used to
24:42say up until last year and I've worked
24:46and done a lot of advocacy with the
24:47Parkinson Foundation they're a great
24:49organization and we used to say a
24:51diagnosis of Parkinson occurs every 9
24:53minutes we underestimated and now
24:56there's a new paper out in nature from
24:58Allison Willis and colleagues at the
25:00University of Pennsylvania which is a
25:01Parkinson Center of Excellence it's one
25:03in six minutes one in every six minutes
25:08diagnosed it's a problem folks it's
25:11let's say it's not a problem let's say
25:12it's a challenge and we should take this
25:14on as a challenge so we think about care
25:16we've got to think about not only what
25:18we're going to do down the road but also
25:21how we're going to help these people and
25:22so when we think about secrets and
25:25things looking for a sign is important
25:28knowing when you're going to get
25:30something and even the most faithless
25:32among us are waiting to be proven wrong
25:34great quote from the novel pretty by
25:36Julian um Julian Petty now what you will
25:42see is when Julian Lauren put this into
25:45her novel she was saying look we need to
25:49know what this is you know you need to
25:52know what it is that you are trying to
25:57repr represent what you're trying to go
25:59for you know if you don't know what you
26:02have then how do you know you know what
26:04to do okay and so helping people to
26:07understand what they have and what they
26:09don't have is actually an important part
26:11of this journey part of that se that
26:14care and so my apologies to people with
26:16Alzheimer's but but Parkinson is not
26:17Alzheimer's disease totally different
26:20and totally different treatments totally
26:23different Horizons when you take
26:25Parkinson medications one thing that you
26:27learn this is a great quote from Joshua
26:29Harris the right thing at the wrong time
26:30is the wrong thing and anybody who has
26:32kids I have two knows this quote okay
26:35it's it's been around for thousands of
26:37years but in Parkinson unlike any other
26:40disorder on the planet the timing really
26:44matters to how we care for people we
26:46don't get that message out enough when
26:49we deliver a diagnosis of Parkinson when
26:51we say you know those four words you
26:54have Parkinson disease we have to
26:56remember that those words words and how
26:59we deliver a diagnosis are going to
27:01they're going to last forever for that
27:03person that moment is going to last
27:04forever and we do a terrible terrible
27:07job at this an indu sub manian who's a
27:10doctor at UCLA who's an integrated
27:12medicine specialist and a movement
27:13specialist myself and Johnny atcherson
27:17who is a general doctor in the UK who's
27:19an artist but also has Parkinson we run
27:22this blog called Parkinson Secrets where
27:24we give you know kind of advice on hot
27:26topics this month's Hot Topic that is
27:29just going up is is about how we do such
27:31a poor job for Parkinson and Johnny
27:34who's a great artist sent this to me
27:35this morning and uh and he says it's
27:38hard enough to get in and then you have
27:40to get out you know and I think it's
27:42it's the wonderful the idea of the Maze
27:45and how important that is and when we
27:48see folks in the clinic we have to be
27:52thinking like proactively for them
27:54what's what are some of the things that
27:55could happen to you you could fall and
27:57so does your doctor actually sneak up
28:00behind you and pull your shoulders or if
28:01you're in your Europe they pull your
28:03hips okay to see what your balance is
28:06like if they don't they should because
28:08we should be doing everything we can to
28:10prevent Falls seems pretty simple to me
28:12we don't do it should we be taking
28:15multivitamins every day and Ken and I
28:17were talking about this before how there
28:19are all these neutral companies so if
28:20you want to make money invest in a
28:22neutraceutical company but if you have a
28:23disease like Parkinson disease you don't
28:25need all of that stuff okay you need is
28:27one multivitamin because if you're on
28:29dopamine replacement it actually
28:31depletes certain things like B12 and B6
28:34and increases other things like
28:35homocysteine so making sure you're on
28:38just a a simple Centrum or a simple
28:40multivitamin that's what you need okay
28:42not overdosing vitamins but it's very
28:44important we don't tell people that
28:47super important part of the sea like why
28:48are we not telling people these things
28:51did you know that the risk of Parkinson
28:53disease getting melanoma getting a skin
28:55cancer with Parkinson is twice the risk
28:56of the general population if you live in
28:59Florida it's probably even more okay we
29:01don't tell people that we should be
29:03telling people you should go to see the
29:04dermatologist as often as you see the
29:06dentist hoping everybody here sees the
29:08dentist at least once a year okay super
29:11important that's part of that se we're
29:13not doing a good job on that aspect and
29:17it's it's that whole puzzle that has to
29:20come together in order to get to that
29:22ending Parkinson disease being proactive
29:26okay if you have Parkinson disease one
29:30in three people who have Parkinson are
29:33going to go to the hospital at least
29:35once a year one and three and once
29:37you've gone the ratio goes to one and
29:39two we know this from doing multiple
29:41studies through the Parkinson Foundation
29:43all the studies that I did with all of
29:45these great investigators all around the
29:46world didn't change a damn thing okay
29:49you know what did making this kit that
29:53we gave out hundreds of thousands of
29:55these kits it's like you know when you
29:57when you have a bag and you pack a bag
29:59because you know you're you're you know
30:01you're going to go to the hospital
30:02because there's a baby coming okay if
30:04you have Parkinson you should have bagp
30:05packed and this has everything you need
30:07to survive a a Parkinson hospitalization
30:09all the things that you give to the
30:11doctors and the nurses because they may
30:12not listen to you they may not know you
30:14may have to be the advocate that helps
30:17to get you through that hospitalization
30:19because shocker Cher number four okay
30:24the hospital is a very dangerous place
30:26for people who have Parkinson disease
30:28okay great quote by Jared kinz I have
30:31have a favorite Cemetery I go to because
30:33it's really clean and the doctors and
30:35the nurses are all very nice okay think
30:39about it do you have a plan for therapy
30:43exercise it turns out that exercise is
30:46like a drug for Parkinson did you know
30:48that did you know that most experts
30:51now prescribe exercise for Parkinson
30:54disease but they say do exercise for
30:57Parkinson disease they don't
30:59say what you should do they don't say
31:01how much you should do it they don't
31:03look at at what your other you know
31:06conditions are that may impact what you
31:08can and can't do having a plan okay
31:11having a plan and a strategy is so
31:14important with Parkinson and we can't
31:15just keep saying okay do this do that it
31:18needs to be a plan you need to check
31:19back in and make sure you're adjusting
31:21that plan over time best way I can
31:24describe it is is when my son who's 16
31:26now when he was in first
31:27grade I'm playing chess with him before
31:30he goes to bed and I'm not a bad chess
31:35player but he was in the process of
31:38beating me for the third straight time
31:42grade and he says to me dad do you know
31:46what your problem is this my first
31:49grader okay and I said no Jack what's my
31:52problem and he said your problem is you
31:54don't have a strategy you sit down and
31:57you just show up you don't have a
31:59strategy I have a strategy Dad okay when
32:01you have a chronic disease you need to
32:03be checking in you need to have a
32:05strategy and especially if exercise has
32:07such a high impact on this exercise and
32:10other things need to be coupled with
32:12strategy okay and some of the things
32:15that you'll hear from people is about
32:17nutrition and certainly nutrition is
32:19important and we know in Parkinson a
32:21Mediterranean diet seems to be better
32:23but we don't understand a lot about the
32:25microbiome we're talking about you know
32:28absolutely billions of different
32:29organisms that change by the minute and
32:32change on all the things you do so you
32:33have all these people telling you and
32:35writing all these books about what to do
32:36with nutrition so I often say to folks
32:39be careful of what I call Nutritional
32:41overreach somebody telling you you know
32:44do this do that do this buy this because
32:47it's going to help sometimes it can
32:48actually hurt sometimes probiotics can
32:50actually hurt and so so I think it's
32:54important to take care of your body and
32:56I love the quote if you don't take care
32:57of your body where are you going to live
32:59that's important but be careful of going
33:03important and what's more important than
33:05depression depression was listed as the
33:07single greatest hurdle in the last
33:10decade we were talking to USA today and
33:12they said what's the biggest hurdle in
33:13Parkinson disease so a decade ago we
33:15were talking about it being
33:16depression it's diagnosable it's
33:18treatable it's part of Parkinson okay
33:21now we're doing a better job in
33:23depression and we realize that one in
33:25six people are actually going to get
33:26demoralized that makes perfect sense we
33:28just never thought about it okay and so
33:31it's important for us as we're visiting
33:33with people to take care of caregivers
33:35take care of persons with disease and
33:37address demoralization as important as
33:40it is with Parkinson what else is part
33:42of the sea your magic Sleep Number some
33:45of you have a ring like I do on your on
33:47your finger some of you have a watch now
33:50we can watch sleep and some of you think
33:52you're sleeping but you're not actually
33:54sleeping well in Parkinson you have less
33:57Reserve in your brain that means your
33:58brain is maybe you know let's let's say
34:03not functioning like when you were 15 or
34:0620 okay maybe not quite as quick because
34:09of that you have less of what's called
34:11Reserve you want to improve your
34:13function best way to improve your
34:16function sleep if you think you're
34:18sleeping a lot a lot of people are
34:21stunned when they actually look at one
34:23of these sensors I've got two of them on
34:25right now okay and the third one in my
34:27pocket okay you look at the sensor and
34:30you can see you figure out what is that
34:32magic number is it 7 hours 8 hours of
34:35good quality sleep that's going to help
34:37you if you have a neurod degenerative
34:38disease like Parkinson it's going to
34:40help with the fatigue and so
34:42understanding I call it your magic Sleep
34:43Number what's your number that you're
34:45going to be able to help you to get
34:47through that day more than two-thirds of
34:50people have pain with
34:51Parkinson nobody ever asks don't ask
34:56what' your mother say don't don't ask
34:58you're not going to get right and so so
35:00we need to begin to ask people you know
35:02like part of that sea what are the
35:04things that are going to impact your
35:06life two-thirds of people have this
35:09asking and then we have people who have
35:11gotten treatments okay so part of the C
35:14is taking care of people who have gotten
35:16some of these Advanced treatments one of
35:18the ones that um that we've worked on in
35:20our lab for over two decades is is
35:22called deep brain stimulation and it
35:25reminds me The Humbling part of this
35:26reminds me that experts are usually you
35:29don't get paid for the easy bread and
35:31butter cases if you're in medicine you
35:33get paid for the hard cases and some
35:34people get these devices and don't do as
35:39do and when we saw these people coming
35:41in from all over the world you know we
35:44try to rethink we try to change our
35:45perspective we try to troubleshoot
35:47because a lot of people just figure well
35:48I tried it and it didn't work right well
35:51it turns out that when we looked at this
35:54and this is a picture of a brain and a
35:56picture of of a paper that appeared in a
35:58journal card Archives of Neurology that
36:02jamama it turns out that half of these
36:04people we could help we just needed to
36:08look we needed to take a picture here's
36:10a picture of somebody and the picture
36:12shows an arrow okay you're saying why
36:15why is he showing me this because that
36:18lead that was stuck into the brain is
36:21sitting on a structure called the pineal
36:24gland which is right in the center of
36:27the seed of the Soul people say you know
36:29philosophers Ken Ford's a philosopher
36:31they say seed of the soul is in the
36:33pineal gland they didn't intend for it
36:35to be in the pineal gland but nobody
36:36took a picture of it to see where it was
36:39so we plucked it out Dr foot and I put
36:41it back in the right place it's doing
36:43great okay so it's important to always
36:46rethink and not give up even if things
36:48don't go when we care for people the way
36:51that we want to this is a chronic
36:53condition with Parkinson a livable
36:55condition and finally we talk about
36:57research talk about developing new
37:00treatments to prevent Advocate care was
37:04the C right T development of new
37:08treatments okay and will it surprise you
37:11if I tell you that Parkinson is
37:13underfunded HIV gets about three billion
37:15a year and that's prevented thousands if
37:19not millions of people from Ever
37:21developing AIDS and very severe HIV it's
37:23really changed the course of that
37:27about 200 to $250 million many more
37:30people with Parkinson it's growing
37:33faster than Alzheimer's and any other
37:35neurological disorder that funnel folks
37:38is not big enough okay and somebody
37:41asked me the other day about you know
37:44tell me about all the failures like we
37:47put all this money in and there are all
37:49these failures I said I'd love to I love
37:51to talk about failure Okay the reason
37:54that I love to talk about failure is if
37:56you're signning scientist and you've
37:57been in the field you realize you need
38:00to fail a lot to succeed if our funnel
38:04is not big enough and we're fighting
38:06over scraps we're not going to even fail
38:08enough to get to where we need to go
38:12this is just known you know this is this
38:16is centuries old wisdom and so we think
38:19about developing therapies for Parkinson
38:22I like to think about it in buckets
38:24because I I consider myself sort of a
38:25simple guy and my and my my son said I
38:28needed to get my act together okay so
38:30the three buckets that I think of this
38:33in are the first bucket is symptomatic
38:35these are therapies that now that could
38:37help people now okay the second bucket
38:40is what if we could slow down the
38:42disease long enough so that something
38:45else overtakes you okay and then and
38:48then of course when they get that then
38:50then we've got to push it out a little
38:51further right but so that's a strategy
38:53we call that disease modifying some
38:55people call that neuroprotection
38:57okay people stopped using the word neuro
38:59protection and degenerative diseases
39:00because it couldn't get there so they
39:01changed the name okay it's a good
39:04strategy and then the last bucket is
39:07cure and we're far away from a cure
39:10although people will say we're going to
39:12cure this in five years give me all your
39:13money and I've heard this over and over
39:15and I work for the Parkinson Foundation
39:17as a as an advocate and as their medical
39:20director and advisor since 2006 and and
39:24my joke is not a joke it's the every
39:27month somebody claims they cure
39:28Parkinson disease and I guarantee you if
39:31we cure Parkinson disease I'm going to
39:32give it to you I'm going to give you the
39:34formula it's not going to be like Coke
39:35I'm going to open the I'm going to give
39:36it to you okay so we're not there on
39:39cure and I like to say the SE bucket you
39:43know we should change the name to the
39:44Pea bucket not what you're thinking okay
39:47Precision medicine like so certain genes
39:50you know that certain uh genetic
39:53abnormalities lead to Parkinson maybe
39:54those will be the first ones that we
39:56devel velop certain specific therapies
39:58to try to treat and the therapy dopamine
40:02okay which is what we gave to the woman
40:05in the video I showed you from
40:07Awakenings from Robin Williams dopamine
40:10as a treatment is still the best single
40:12treatment for Parkinson yet it's over 50
40:14years old and it doesn't stop disease
40:17progression or slow disease progression
40:19so we still I mean we're grateful to
40:21have it grateful to have deep brain
40:23stimulation as well but it's not enough
40:26okay and so we have to begin to ask
40:30questions particularly about hot topics
40:32of what's going on in research and so
40:35induc sub Manan at UCLA and Johnny
40:37atcherson and I we put something up
40:38every month like a detailed blog that
40:41keeps track of some of the newer things
40:43that are happening you know so people
40:45can you know become educated and
40:47actually understand what's going on and
40:49so there's been a lot of controversies
40:52do I need a skin biopsy do I need a
40:53certain type of scan like a DAT scan for
40:55Parkinson disease okay turns out that
40:59the best diagnosis is still with Dr
41:02Garder okay here in his office as a
41:05neurologist even better than what we're
41:07seeing in some of these tests tests can
41:10be useful along the way but it's still
41:12so important to to actually touch and to
41:16treat the person with Parkinson you
41:18probably also heard in the news there's
41:20been a big breakthrough in Parkinson
41:22right a big breakthrough you all have
41:23heard that and um and the break bre
41:26through was in an evolution it's a story
41:31of how since the early
41:332000s we have begun to to be able to
41:36identify Parkinson in the blood okay and
41:40we did that similar to another disease
41:42called mad cow disease nobody Run for
41:44the doors okay we use that technology on
41:46degenerative diseases and it's actually
41:49been going on for a while but finally
41:51you reach an inflection point where you
41:52say okay now if we put Parkinson blood
41:57or Parkinson cerebros spinal fluid the
41:59fluid that bathes the brain and the
42:01spinal cord into a tube and we shake it
42:04really hard for like 20 hours we can
42:07mark it and separate it and then see
42:10some of these Parkinson proteins and so
42:11that's what people are talking about the
42:13ability to Market in blood will it
42:15change the treatment maybe one day but
42:17it's still more of a diagnosis and more
42:19of looking at progression what's coming
42:22what are we seeing what's coming in 2024
42:25okay for Park and disease well one thing
42:27you're going to see coming this week and
42:29I was joking when I came in I always
42:31Chang my slides right up until the
42:32minute and I know a series of papers are
42:35coming out this week on this in a major
42:37journal but they didn't hit right before
42:39so I can't tell you the answers that
42:40they were going to tell you so sorry to
42:42leave you in that but we know that as we
42:47are Marching toward more trials that
42:50we're going to have to do a better job
42:51of classifying Parkinson which isn't one
42:54disease developing staging systems and
42:56classification systems to help us to
42:58drive the clinical trials okay and we
43:02have to ask the certain questions like
43:03why are we classifying patients with
43:06Park is that going to help us maybe
43:09maybe not is it going to help us for the
43:11for your clinicians to talk to each
43:13other is it going to help you to
43:15understand where you are so there's a
43:16whole bunch of things that as we become
43:19a little bit more seasoned we're going
43:22to be able to to help people and
43:24hopefully help to draw those clinical
43:26trials and you'll see and you'll read
43:29about all these in Innovations one that
43:31we wrote about is the the vibrating
43:32glove you may have seen it on NBC right
43:34put the glove on and your Parkinson gets
43:37better okay and there is something to
43:41vibration therapy and in fact there was
43:43a a neurologist called shako who would
43:46see people in the Sal petrier it was a
43:48hospital for women he was some say he
43:53neurologist and people would come from
43:55all over the world to see him and they
43:56would get out of the hor drawn carriage
43:57or they would get off after a train ride
44:00and their Parkinson would be better and
44:03he thought well it was probably better
44:04because of the shaking the vibration and
44:06that's where vibration therapy started
44:08and vibration therapy can be helpful to
44:10mildly improve Parkinson it might even
44:12be able to change some of the
44:14oscillations in the brain that we study
44:17for different diseases even in my lab so
44:20this got on NBC and everybody said I
44:22want these gloves give me the gloves I
44:23see the guy on TV with the gloves but so
44:26far folks we haven't seen a placebo
44:28controlled study of this we've seen this
44:30over and over so so I'll be the first to
44:33jump on board and put the gloves on the
44:35Michael Jackson glove one or two and and
44:37give them out but we're not quite there
44:39so it's important that we think through
44:41these things but the idea is is a good
44:43idea how about cough syrups for
44:46Parkinson disease well it turns out that
44:48one of the ingredients in cough syrup
44:54used on one of the end enzymes that's
44:56important particularly in one of the
44:58genes that causes Parkinson called the
45:00GBA Gene to potentially treat or slow
45:03progression and so there's a new study
45:06that's going on in the UK and then
45:07there's a it started with a guy named
45:09Tony shapira who published the first
45:11study inj neurology a couple of months
45:14ago on this and so there might actually
45:16be something to it the problem is is we
45:18don't want you going and grabbing cough
45:19syrup and taking it because that can
45:20actually worsen your Parkinson
45:22especially all the other ingredients
45:23plus we need to test it to make it's
45:26safe to make sure it's something that
45:28might be helpful but the answer could be
45:31under our noses and so we have to look
45:33and remember there are many types of
45:35research for Parkinson so here's Isa go
45:38gundz here being interviewed by CNN one
45:40of our uh scientists here on brain
45:43oscillations uh Karen heglund doing
45:45research looking at cough and swallow
45:47the leading cause of death in Parkinson
45:49is aspirating into your lungs Don Bowers
45:52in neuros cych uh a paros Shukla and
45:56stimulating from outside the brain
45:57remember it's not just drugs folks okay
46:00there are lots of things that are going
46:02to drive innovation in the field so on
46:05the horizon you're going to see us
46:07targeting specific genes you're going to
46:10see new techniques to modulate the brain
46:12and the Brain circuits new drugs and
46:14then repurpose drugs maybe right under
46:17our noses and even in our lab and others
46:20around the world have been looking at
46:23the idea of understanding the brain's
46:25language so that's what I've done for
46:27most of my career listening to the cells
46:28in the brain trying to understand that
46:30language and then developing implants
46:32and things that might be able to
46:34communicate and improve the symptoms and
46:38this is a very early example from our
46:41laboratory where it's kind of like an
46:43EKG for the brain okay this particular
46:45person has a tick could be a Tremor or
46:47whatever and learning how to pick up
46:50those signals and then to teach a device
46:52how to respond in real time we're now
46:55seeing this after several de we're now
46:57seeing a lot of these Innovations make
46:58their way into the clinic to try to
47:01treat specific symptoms for specific
47:05folks so HRI roer was a Nobel Laureate
47:09and he said that science means that we
47:12constantly have to walk a tight rope
47:14between Blind Faith and curiosity
47:17between expertise and creativity between
47:20bias and openness and experience and
47:24Epiphany between ambition and passion
47:27between arrogance and conviction in
47:31short between an old today and a new
47:35tomorrow and so we think about this
47:38there are all sorts of new therapies you
47:41may have seen this one that was uh
47:43recently on 60 Minutes focused
47:46ultrasound okay in the brain and you can
47:49see you know ways that we can stimulate
47:51from outside the brain to either make
47:53lesions in circuits that's what a focus
47:55ultrasound does or we can shoot the
47:58focused ultrasound in at very low
48:01frequencies to not injure anything and
48:03to open up you see this blood vessel
48:05here to open up the bloodb brain barrier
48:08and the way they do that is is you
48:09inject some micro bubbles into the brain
48:12you see those little bubbles that are in
48:13there and then the focused Ultron makes
48:16the bubbles big and then it pushes The
48:18Vessel open and opens up these areas
48:20called Gap Junctions and things can
48:23suddenly flow in to the brain and so
48:26thinking about also maybe this isn't the
48:28end you know like therapy there are some
48:31problems with this too there are some
48:32positive things about it both as a
48:34therapy but but thinking out of the box
48:37like how we can get things to the brain
48:40this is Ed boen at Boyen works up in MIT
48:44and he and near Grossman developed a
48:46technique where they can stimulate from
48:47outside the brain so maybe we could get
48:49rid of the deep brain stimulators I
48:50think if people said hey we don't have
48:52to go into your brain at some point
48:54you'd say sign me up right right and so
48:56we're not quite there but thinking out
48:58of the box and seeing some of these new
49:01things is important the combination of
49:03light and genetics called optogenetics
49:06called diesel Roth and others from
49:08Stanford and other Laboratories around
49:10the world have really pioneered this in
49:12the laboratory trying to use little tiny
49:15particles called nanop particles and get
49:17them to where they need to go and then
49:19upregulating them with light this is one
49:21of our fellows who's now up at Southern
49:24Illinois Dr kuzi read a great article on
49:27this but thinking about all of the ways
49:29that we can change and think out of the
49:32box you know about uh about how we're
49:34doing things and how we can do things
49:37differently and so sending these small
49:39particles called nanop particles we're
49:41using magnets and magnets and
49:42electricity and magnets and heat
49:45together and so these are some of the
49:47just the cool science things that I saw
49:49on the road recently when I was in a um
49:54France and thinking about prevention and
49:59thinking about what is it that we can do
50:02as a field to try to reduce the number
50:05of cases we have and the burden that we
50:07have of Parkinson and so there's this
50:09great quote by William F about vaccines
50:11being the tugboats of preventative
50:13health and it isn't necessarily true
50:16that all diseases are going to get
50:18vaccines but there is a link between the
50:20immune system and the brain and the
50:23immune system and other organs and
50:26understanding that and understanding how
50:30utilize this relationship to try to
50:34develop therapies that might slow
50:36progression or might allow us to kind of
50:40reach that end point of the P bucket as
50:42we said or the C bucket at some point is
50:45important we're still far away but it's
50:48something to be thinking about P is for
50:50prevent a is for Advocate C is for care
50:55and T is for the development of new
50:57treatments and as we March in that
51:00direction you're going to hear a lot not
51:03only in Parkinson but in other diseases
51:05about something called a
51:06biomarker something that can tell you
51:09what's going on and this was sort of the
51:11big rage you know like oh there's a big
51:13breakthrough it wasn't a treatment
51:15breakthrough it was an inflection point
51:17after many years of research from many
51:19Laboratories as to how to Mark Parkinson
51:22how to tell somebody has Parkinson and
51:24when you have a really great marker of a
51:27disease then instead of needing
51:30thousands of people to enroll in a
51:31clinical trial you only need hundreds
51:34and that can be a GameChanger when we're
51:37thinking about pushing more dollars more
51:40science more technology but also more
51:44hope for people as we move forward so
51:46this is a biomarker of Imaging Dave
51:48Valen cour and I work on just down the
51:50road here called freeat Imaging for
51:54Parkinson I am supported by National
51:56Institutes of Health by multiple grants
51:58so I always say thank you to the
52:00government for for uh for supporting
52:02much of the work and the taxpayers and
52:05thank you all for the invitation to
52:07speak tonight and I would just say that
52:09when we think of this think
52:13about what we can humbly do to leave the
52:17Next Generation in a better place than
52:20this generation and to try to take those
52:23numbers with Parkinson and turn it
52:25around and so that's what I want you to
52:27think about tonight that's what I I hope
52:30uh has inspired you in some way to think
52:33about what we can do to change things
52:35for the Next Generation so thank you all
52:37for the invitation to to speak it's an
52:48here thank you Michael so much so I'm
52:51sure there's a plethora of questions
52:54here um so I'm gonna take a few we're
52:57gonna start back here
53:05okay hi Dr Oaken thanks for being here
53:08I'll stand up so you can see I can see
53:10you I see who you are it's nice to see
53:12you yes he's seen me in the operating
53:15room uh you gave kind of short shrift to
53:20biome uh I hear a lot about that as a as
53:25a something positive with with Parkinson
53:28if if that is true does it happen
53:32through the blood or through the Vagas
53:34nerve or is it all just quackery in the
53:37first place yeah okay so great I'm it's
53:39a great question and I did give short
53:41shriff and the reason I gave short
53:42shrift was I you know I like to temper
53:46things a bit so people who are actually
53:47seeking care kind of go to things where
53:50we have you know some answers that might
53:53affect their lives and I I find that the
53:55nutritional overreach sometimes people
53:58get over excited I'm super excited about
54:01the research in nutrition it's one of
54:02the areas that is expanding the most we
54:05have a whole bunch of investigators over
54:07the last five years that we've been
54:09investing in you know here you know to
54:11do research in this area and I think
54:14that it's important for people to
54:16realize that when you look at the gut in
54:19Parkinson or you look at the gut in a
54:21normal person there are absolutely just
54:24millions and billions of fudges and
54:27viruses and and things that are living
54:29in there and if you sample it called the
54:32microbiome you take a sample and you
54:34look at this there's Absolut this is
54:36mindblowing there's no human here
54:40present nobody that I've met that can
54:42look at that data and interpret it this
54:45is going to have to be interpreted by Ai
54:47and by computers and of course it
54:49changes dynamically over time I mean
54:51this is just mindblowing to think about
54:53what's going on now there was a great
54:56experiment that was done on the
54:58microbiome in California and then one of
55:01the investigators was young mooved to
55:03Emory named Samson and they published a
55:06number of great papers and several other
55:08folks have done this as well where they
55:10can actually show where they change the
55:12microbiome and induce Parkinson and make
55:14symptoms worse and better in the animals
55:16it's pretty interesting okay it's pretty
55:19interesting and so we know that there
55:20are certain things that you can do
55:22symptomatically with your diet in terms
55:24of timing with certain types of diet we
55:26know certain proteins affect drug
55:27absorption so it gets very complicated
55:30both in the care area but the question
55:33is is what's going on and is Parkinson
55:37two different versions of Parkinson so
55:39there's a great pathologist in Denmark
55:42named perr Borger great name right perr
55:45Borger so per Borg Heimer has been
55:48writing a lot about brain first
55:50Parkinson and body first Parkinson and
55:52one of the the big theories is is that
55:55the body first Parkinson runs through a
55:57nerve called the Vegas nerve that
55:58connects the brain to all the different
55:59organs in the areas and that that's part
56:02of the connectivity but we don't know
56:04what we don't know and anytime a speaker
56:07comes up in front of you and gives an
56:08answer that that that is that long it
56:11tells you they don't know the answer to
56:12the question okay but yeah I didn't mean
56:15to give short shrip I am excited about
56:17that area I know there were some hand
56:22ready thank you very much it was very
56:25enlightening uh many years ago there was
56:28thought that there was an increase in
56:31Parkinson from the people that survived
56:33the Spanish Flu is there any indications
56:36that maybe the people that survived the
56:37Corona virus will have an increased
56:40incident yeah so this is a great
56:42question and I'm just going to
56:43paraphrase back for folks there was this
56:46notion that um that all of Parkinson
56:49disease I'm going to tell you something
56:50really interesting there was a notion by
56:55neurologists okay so they must have been
56:57someone named Schwab and post ganzar
56:59okay and they had this
57:02hypothesis that that because of the
57:04Spanish Flu that all of Parkinson would
57:06die out because only people were going
57:08to get Parkinson were the ones that got
57:09it from the flu they were so sure of
57:12this hypothesis they were I think it was
57:15either time or Life Magazine they they
57:18they were just absolutely you know to
57:21the to the level of arrogance I think
57:23that they they bet anybody
57:25case of scotch that could show them a
57:27case that didn't have anything to do
57:29with the Spanish Flu okay and after
57:32several cases of scotch they abandoned
57:35that hypothesis okay so so so that was
57:39kind of interesting and so the question
57:41of viruses and risk it didn't it didn't
57:44mean that they weren't right at some
57:46level but not all of Parkinson was
57:48caused by that now when we look at flu
57:51there's some papers on flu and Parkinson
57:53disease when that was published recently
57:55in G neurology that was very important
57:57and now Corona virus even this morning
58:00there were for I know all of you use X
58:02or Twitter or whatever it's called now
58:04but there's a lot of scientists are on
58:06that and even this morning there was um
58:08a tweet from Eric toppel who wrote the
58:11democratization of data and and is into
58:13AI talking about a new paper and the
58:16relationship to degenerative diseases
58:18and whether we're going to need to
58:19monitor we don't know the answer yet and
58:23there's a lot of debate
58:25but the debate will um will fade as we
58:28get more years of followup and so we
58:31won't know for sure but there are some
58:34worrisome signs that that there may be a
58:37relationship you know between these two
58:39things and and this could push if it if
58:42it is true and I hope it's not but if
58:45it's true on a large scale this could
58:47push that number even higher and at a
58:50faster rate of Parkinson so it's
58:52something that is very worrisome
58:56Dr cier my good to have you back here
58:58Ina great to be here two questions first
59:02is a followup on the microbiome question
59:04and the question is do you ambition in a
59:08few years of taking stool samples on
59:11patient with Parkinson disease and
59:13prescribe uh mainly probiotics specific
59:17to develop some bacteria that could help
59:19and is that I know that's people there
59:21are people working on that what are your
59:23thoughts about that so I think it's it's
59:25totally possible across there will be
59:28some diseases that I think go in that
59:30direction and it may not be Parkinson or
59:32it may be Parkinson but I do think that
59:35um as gross as it sounds I think that
59:39that what you see in stool samples it
59:42can be used you know to better
59:45understand the microbiome and to design
59:47therapies and so I think it's totally
59:50possible will it happen across all of
59:52Parkinson I'm not sure because Parkinson
59:55is such a heterogenous disease 20% of it
59:58is less than 20% are genes you know
01:00:01there are multiple different causes and
01:00:02so you know it might not end up being a
01:00:05one- siiz fits-all but I do think that
01:00:07there's a good chance you're going to
01:00:09see that what you are seeing now are a
01:00:12number of groups and um and there's some
01:00:14papers that are coming out uh on people
01:00:17doing feal microbiota transplantation
01:00:21transplantation of the cells back in so
01:00:23far hasn't been like super successful
01:00:25but again sometimes when people try
01:00:27things you know it's like it's like
01:00:29being I I I was telling the students
01:00:31this morning it's like being first in
01:00:33line at the keg for a drink of beer
01:00:35isn't always the best place to be okay
01:00:38and so a lot of these these people that
01:00:40they want to be first on feal
01:00:42transplantation first may not be
01:00:43necessarily that it's wrong but the
01:00:46appreciation the understanding may not
01:00:47be there you had a second question um
01:00:49can you comment on immunotherapy on
01:00:51Parkinson's specifically as it relates
01:00:53to Alpha nucle immunotherapy yeah so
01:00:56immunotherapy for Parkinson disease and
01:00:59and this was you know kind of on the
01:01:01tugboat slide of talking about William
01:01:03fos and the and this idea of can you use
01:01:06the immune system against Parkinson the
01:01:09answer is yes so Parkinson deposits a
01:01:12protein in the brain called Alpha
01:01:14nucleon people call it Louis bodies it's
01:01:16actually named after a neurologist I
01:01:17don't think a neurologist would have
01:01:19wanted to be named after a you know a a
01:01:21a bad protein that deposits in the brain
01:01:24and Par but so be it so Frederick Louie
01:01:26gets his name there we talk about Louis
01:01:28bodies they have this thing called Alpha
01:01:30and nucleon and so you say well let's
01:01:32just send antibodies so there's been a
01:01:34couple of antibody trials published in
01:01:36the New England Journal of Medicine
01:01:37didn't work okay some even had side
01:01:39effects of other therapies and so the
01:01:42question comes up is it is it enough to
01:01:44scrub the brain clean by using either
01:01:47viruses or immunotherapies or antibodies
01:01:51you know is that enough or will they
01:01:52still have Parkinson because
01:01:55these proteins these deposits these
01:01:58plaques like you get plaque on your
01:01:59teeth you get plaque on the brain you
01:02:01know like if you get rid of it they
01:02:02still may have Parkinson they may just
01:02:04have a clean brain what is most
01:02:06interesting is is in Alzheimer's disease
01:02:08a lot of people had begun to give up on
01:02:10that but some of these new antibody
01:02:12therapies by clearing away some of the
01:02:14amalloy and the plaque there seems to be
01:02:16some mild benefit to that and so it
01:02:19could be that we're on the road to um
01:02:22what we see in cancer therapies where
01:02:24you a combination of therapies where we
01:02:26you you get a cleat in the ground and
01:02:27you get you get a foothold and maybe
01:02:29piece of the foothold is there's a
01:02:31little bit of benefit from clearing
01:02:32something that's a late process that
01:02:34happens late in Parkinson and then we're
01:02:36going to need drugs and other other
01:02:37things that are going to come in
01:02:39combination like combination
01:02:40chemotherapy hopefully it's not like
01:02:41chemotherapy but combinations of drugs
01:02:43that that strike at different aspects of
01:02:46it but I think a lot of the scientists
01:02:48are concerned that when we go after the
01:02:50sin nucle and deposits it may be too far
01:02:53along in the process process but what is
01:02:55cool is we're able to do it in the
01:02:56animal and in the human and uh and then
01:02:59we'll see and um there there may be some
01:03:01benefit but it hasn't been awesome yet
01:03:05so we're hoping for an awesome moment an
01:03:09moment okay we have time for about two
01:03:12and I have that you and you and I'll
01:03:14take you sir okay three
01:03:19then Dr thank you very much for coming
01:03:22this has been very interesting I have
01:03:23two question questions for you you
01:03:25indicated you have a sleep monitor on
01:03:27your wrist and in your pocket and I
01:03:28think in two pockets can you can you
01:03:30tell us and on your hand can you tell us
01:03:32what what is the name of the sleep
01:03:34monitor that you recommend yeah and then
01:03:36the second question is Muhammad Ali had
01:03:39Parkinson for 33 years Michael J fox is
01:03:42still alive he's had it for over 34
01:03:44years how do you explain that these
01:03:46individuals have coped with this long a
01:03:48period of time and maybe because it's
01:03:50lasted so long for some people it
01:03:52doesn't have the urgency that probably
01:03:54HIV or other uh diseases had and that's
01:03:58why there seems to be slow funding for
01:04:00it in Congress yeah great questions okay
01:04:03so let's start first of all I um I will
01:04:06not endorse anybody's product but I will
01:04:09tell you I have an eyewatch I have an
01:04:11iPhone and I have an AA ring and uh and
01:04:14and I don't think there's anything
01:04:15magical about you know like which device
01:04:18you know you know is the one that's
01:04:20right for you it's just that these
01:04:22devices are now able to do things that
01:04:25seem just absolutely mind-blowing crazy
01:04:28to me so like when I'm in bed at night
01:04:31and you know my wife is meditating or
01:04:33doing whatever she's doing and and I'm
01:04:35sitting there listening to a book or a
01:04:37podcast or whatever and I fall asleep
01:04:39you know in the middle of the pock this
01:04:40thing picks up right when I fall asleep
01:04:43looks at my heart rate variabil is able
01:04:45to tell that and then is able to tell me
01:04:46when I wake up how many hours I actually
01:04:48got of sleep and whether I was it's not
01:04:50perfect it's not like a sleep study that
01:04:52we do you know at the the university
01:04:54it's not to that level but it's it's
01:04:56pretty awesome to get you close enough
01:04:58to that and then you know once you get
01:04:59to a certain number of hours you're
01:05:01going to do better the next day with
01:05:03those hours and it also can tell you if
01:05:06something's wrong so what the
01:05:08problem say the problem the challenge
01:05:10when you go to a doctor is it's hard
01:05:12enough to get in to see the doctor so
01:05:13they check your temperature and your
01:05:14temperature is 98.6 or whatever they say
01:05:16that's within normal well if the device
01:05:18is checking it all the time your heart
01:05:20rate variability your temperature and
01:05:22everything it can detect small small
01:05:24variations in that so then the device
01:05:26you might wake up one morning and the
01:05:28device may say you should take it easy
01:05:30today you know and then you don't even
01:05:31fret about it you're like yeah I should
01:05:33take it easy today you know because and
01:05:35and the device is right you know there's
01:05:37something ain't right you know something
01:05:38just isn't right so I think there's
01:05:40value to that second question on
01:05:42Muhammad Ali so um so I I subscribe to
01:05:46What's called the gold water rule which
01:05:48you know if those of you that remember
01:05:49when Barry Goldwater ran for the
01:05:52presidency they um they be merched him
01:05:56um and it led to the Goldwater rule
01:05:57because they said he was unfit and the
01:05:59psychiatrists voted him as being unfit
01:06:01for office and so those of us that take
01:06:03care of people we're supposed to take an
01:06:06oath that unless we see the person in
01:06:08person we examine them and we have
01:06:10permission of the family we can't talk
01:06:11about them I was under that oath with
01:06:14the Ali family for many years and then
01:06:16recently they gave us permission and we
01:06:18published his data last year in
01:06:20Parkinson disease in jamama and it turns
01:06:24out that he had a form of Parkinson
01:06:26disease called tremor dominant Parkinson
01:06:27disease it wasn't just from being hit in
01:06:30the head okay repeatedly now that can
01:06:32contribute to neurological damage but he
01:06:34had a a form where he was responding to
01:06:36dopamine he had young onset Parkinson
01:06:39and um and so it raises an important
01:06:43question of what you raise is the
01:06:45awareness of the public it's confusing
01:06:47for the public right to see these things
01:06:50in people and it's also confusing to see
01:06:52where some people at Parkinson can go 20
01:06:5430 years and some people can go 10 or
01:06:57eight right and some people have a
01:06:59Tremor and one in five people don't have
01:07:02a Tremor you you see all of these things
01:07:03and so so I think getting the awareness
01:07:06out is important but there are lots of
01:07:08examples of diseases that have sprinted
01:07:11forward toward getting that funnel
01:07:13increased for funding and getting what
01:07:15they need to change the um the overall
01:07:18trajectory there are lots of examples
01:07:21that have happened and um and these
01:07:23diseases are long-term chronic so I I
01:07:26would love to blame it on that that's a
01:07:28good a good idea but I don't think it's
01:07:31just that I think we just haven't hit
01:07:33the inflection point where you know like
01:07:35in HIV and in polio and everything once
01:07:38we wake up and we get enough people on
01:07:39board and we hit that inflection point I
01:07:42think it's going to change that that's
01:07:44what I think and I give myself and
01:07:46everybody else that's been at it for 20
01:07:48years with Parkinson Foundation Michael
01:07:50J fox Foundation everything I give us
01:07:51all an F an F for not reaching that in
01:07:53Reflection Point but with your help we
01:07:55can hopefully get there
01:07:58yeah good evening thanks for being here
01:08:00yeah just a quick question in your
01:08:02observations with patients is there a
01:08:05higher propensity based on gender age
01:08:09race and you said places to live yeah so
01:08:13um so there are differences the more men
01:08:16get Parkinson disease than women and
01:08:18then the types of symptoms that men and
01:08:20women get are different and that's been
01:08:22studied there are different is in um in
01:08:25race we know for example that people um
01:08:30of African-American or black descent
01:08:32that have Parkinson disease are not
01:08:33getting care so it it isn't so much that
01:08:36there's less Parkinson there but they're
01:08:38just not you know getting the care
01:08:40they're not getting access to new
01:08:43surgical treatments and and this is a
01:08:46huge huge issue and so we have an
01:08:49initiative here at Florida called black
01:08:51PD that we work with Michael J Fox
01:08:54foundation on to try to reach people
01:08:56that have um you know various you know
01:08:59what we call uh folks that have been in
01:09:01communities that are just either not
01:09:04getting the information but also what
01:09:06we've learned is Ashley RWS who was one
01:09:09of our medical students went off to
01:09:10Stanford and came back and she goes into
01:09:12the communities and finds out that we
01:09:14are not doing a great job you know not
01:09:16just in African-American communities but
01:09:18in communities all over the US okay and
01:09:20getting the word out and teaching people
01:09:22about the therapy and also creating
01:09:24trust back and forth we know this is
01:09:27true not just in African-Americans in
01:09:29the US we know it's true in african-
01:09:31American and black populations
01:09:33throughout the world we also know that
01:09:35we see these disparities across the
01:09:37world in other areas we see Parkinson
01:09:39disease in every single continent so
01:09:41it's like pan and deos like and and and
01:09:44so there are some huge inequities and
01:09:49huge problems and um I sat on a
01:09:51committee for the World Health
01:09:52Organization about this and we actually
01:09:55put out a paper two years ago six action
01:09:58steps that the world needs to take you
01:10:01know for improving the disparities in
01:10:03Parkinson particularly in low-income
01:10:05countries but it hasn't improved and the
01:10:09one thing I can tell you that is
01:10:11troubling to me is um is when we keep
01:10:14talking about it but there's absolutely
01:10:16not been any progress in it and that is
01:10:18really frustrating and so it means
01:10:20either we're not doing something right
01:10:22we're not doing it enough and we're not
01:10:25paying attention to it enough and so
01:10:27these things are super important the
01:10:28final point I'll make is is that when
01:10:30you have Parkinson disease having a
01:10:32great caregiver care partner is super
01:10:34important and that actually correlates
01:10:37with how well you're going to do and so
01:10:38when we see somebody in the clinic you
01:10:41know the students always say to you why
01:10:43do you spend so much time with a care
01:10:44partner when they first start and then
01:10:46after they spend a long time they
01:10:47realize ah you should be spending all
01:10:49your time with the care partner and the
01:10:50caregiver because that's the key to the
01:10:52person doing well and it's so important
01:10:56and it turns out that when the the man
01:11:00or the woman has Parkinson disease it's
01:11:03different the support that they get and
01:11:06for women who have Parkinson disease
01:11:07they don't get the same support that men
01:11:10do that's a problem that's a huge
01:11:13problem an unmet need and it's it's
01:11:16something that's been been shown over
01:11:17and over in research yet we still
01:11:20haven't done enough about it to address
01:11:24it so so there are serious inequities
01:11:27and and that should be part of our
01:11:29equation yeah was there one more
01:11:32question in the very back that I
01:11:34see uh thank you for coming doctor um
01:11:37I'm curious is there clinical research
01:11:41that actually shows processed sugar
01:11:44having uh an effect on the development
01:11:47Parkinsons yeah so uh great question
01:11:50there's actually a whole bunch of
01:11:52research on processed sugar and diseases
01:11:55in general processed sugar on dementia
01:11:58in general but not processed sugar yet
01:12:02on Parkinson now the way that these
01:12:04research studies are done so you know
01:12:06here's like in they call it inside
01:12:08baseball for any Baseball fans this is
01:12:09the inside baseball Story the way that
01:12:11these studies are done on pesticides on
01:12:14associations when you want to know if
01:12:16processed sugar is responsible for
01:12:18something you want to know if pesticide
01:12:19is responsible for something one study
01:12:21is one study what you're looking for is
01:12:23a whole bunch of people in a whole bunch
01:12:26of different regions showing the same
01:12:28finding over and over so what we're
01:12:30seeing now with processed sugar and
01:12:33disease are are lots of one-offs okay
01:12:37and what we're going to see over the
01:12:38next you know 5 to 10 years is either a
01:12:41convergence or Divergence of data that
01:12:45suggests that there's something to this
01:12:47story and so I always get a bit nervous
01:12:51about like one study here one study
01:12:53there but in Parkinson on the pesticide
01:12:5620 years ago Ray dorsky and I we talk
01:12:58about this a lot and we're writing
01:13:00another book right now and so we talk
01:13:02all the time and we talk about how 20
01:13:05years ago you know like if you said
01:13:07pesticides and Parkinson disease people
01:13:10you know like we were all like how could
01:13:11that be and there was only one or two
01:13:12studies you said head trauma in
01:13:14Parkinson how could that be and now we
01:13:16say of course of course you know like
01:13:19yeah of course that is so will it be the
01:13:21same story you know for processed sugar
01:13:24I don't know it's too it's way too early
01:13:26to tell although there are some um both
01:13:29intriguing and uh and very worrisome for
01:13:32those of us that like like Coke Zeros
01:13:34and things like that there's some
01:13:35worrisome um information there for those
01:13:38of us that like diets off drinks and
01:13:40other things like that
01:13:42so so y'all thank you so much and
01:13:44Michael thank you so much for being