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Dr. Joaquin Farias’ lecture on dystonia at Harvard University

Dr. Joaquin Farias’ lecture on dystonia at Harvard University


Good afternoon my name is Joaquin Farias
and since 1996 I’ve been researching on dystonia 20 years ago I created the
program inspired by the idea of do-it-yourself I created the program
to train patients to treat themselves this this condition
Dystonia is considered a movement disorder the Dystonia Medical Research
foundation defines it as a condition that produced persistent or intermittent
muscle contractions that produce abnormal postures and movements.
This is Jesus, he was one of my patients, he was born
healthy, the the first months of his life he expressed gentle little tremors
in the arms, at the age of 13 months he started walking normally but at the age
of 18 months he started walking backwards and sideways, this is quite
common among patients affected by Dystonia in the legs so he was he had
expressed hyperactivity in the hip flexors and and the knee extensors in
the right side and then started having involuntary
movements in the neck and hands normally with a patients like this what
is suggested now is; you have three lines of treatment
one is to inject botulinum toxin in the muscle affected
to paralyze the muscle and reduce the spasms the second option is drug
intervention and the third is Deep Brain Stimulation, a Neurosurgery. These are
the most common interventions in this situation. In this scenario the family
and the patient feels like the person in they image you are trying to ride a wave
by you are falling you have no control over the condition that is controlling your
own body you can imagine how distressing is this experience where you cannot even
you send the signal to a part of your body but it’s not responding as you
expected. so This definition of Dystonia and this course of treatment didn’t make
sense to me 20 years ago and doesn’t make sense to me now, my experience with
patients have been completely different and I all explain what I mean with that
so every day I go to work the first thing that I say to myself is: can I be
of help? can can we provide something better for
for these patients? can I do something better for people like Jesus? but if we want to improve the care the first thing that we need to
change is the way we look at the problem so I invite you to look again but we’re
going to look closer we’re going to pay attention to the left
leg what you can encounter is the opposite that the definition says well
what you’re gonna encounter is weakness and the lack of connection you’re going to
see how he is avoiding systematically to do hip flexion in the
left hip and how the left knee is not able to sustain the contraction
a kind of tremor he is flexing and extending so there’s an
impaired communication with the left leg he’s over stepping with the right as
a form of compensation of the lack of stability in the left so over step
and then yeah that was a failure, that was there the opposite we were expected
instead of hyperactivity this is hypo activity in the other side remember in the tremors in the arms
and the head when I met him and they showed me the
video and I did the analysis what I what I saw was something completely different
what I saw is that his left eye was not connected and also in this video in
order to understand what is happening you need to ask what was happening there
and is difficult to see but it is a coin in the floor he is trying to take
a coin from the floor and the left eye is not working. He is a very intelligent baby
so what he does is to over prime the right eye so is contracting the
sternocleidomastoid right to aim with the right eye and because it’s just
just one eye is available even though no clinician knew that so what happens we
will happen exactly what will happen if you try to take the coin from the
floor with just one eye you are gonna see for you it’s gonna look as if
the coin is closer to your body than actually it is so I’m gonna play it this
low motion you’re gonna see how exactly this is what is happening how he aims to
the taket to the coin like two inches higher and there is of target so actually these
movements were not so involuntary. They were actually quite efficient but he was
dealing with a failure in the function so in order to treat dystonia in a
different way one thing I think we need to do is instead of observing what the
patient is doing from outside we need to be in the wave with them we need to be
inside their own perception so you cannot diagnose Jesus if you don’t know
that he was trying to take the coin from the floor so it’s the aim of the
movement and also what he is perceiving how the the body is is interacting with
environment so we can ask the question what happens if if we ask his Jesus to
start asking his left hip to work asking his left knee to work and covering the
right eye and do exercises three minutes twice a day to stimulate the
left eye what happens is this this is Jesus now is walking really well so
here he is neuromodulating in the background so it’s actually controlling his step
he is saying go to the right and saying go go to the left and this allows
a movement that is efficient so neuromodulation is not a technique that
the doctor learns and applies on a patient neuromodulation is a function of
the nervous system so we need to encourage patients to use this function
and develop it so I humbly want to propose a different definition of the
condition I study, it’s true that there is hyperactivity in the brain has
been shown then there is hyperactivity in the
sensory cortex there is hyperactivity in the cerebellum but it’s true also there
is hypoactivity in other networks and it’s true that is hyperactivity in
some muscles but there is also hypoactivity in other muscles so I
think that Dystonia is a functional dysconnection disorder, what
is happening is a form of miscommunication between the neural
cells and I define it a dysregulation of the nervous system and I will not
make the emphasis on the hyper contraction or the hyper tonus and I
will pay attention to the hypotonus and the hypoactivity because what
happens and this is a law that I have been following since I discovered that in my practice is that when you stimulate the area that is hypo
functioning the area that is hyper functioning takes care of itself it’s
going to normalize so it looks that the condition starts in the hypofunction
and then the hyper function looks to be a form of compensation at the neural
level so patients can become asymptomatic through a process of
training on neuromodulation it’s interesting because in the past we
considered the plasticity was only possible in the cortex but now we can
see that we can induce plasticity in the deep brain. This is Susan Birchood
when this photo was taken Suzanne was 16 year old and was training
to be a professional dancer he was young and athletic and perfectly healthy just
a few months after this photo was taken she started developing the first
symptoms of a dystonia so she filled the hands starting having
cramps and then everything moved into the upper body and evolved gradually
into the lower body until she couldn’t feel her right leg and
that was like a neurological blackout and she ended up being a wheelchair user
so things go a wrong turn and the following years and she started
developing more and more symptoms including eyelid dystonia what is called
blepharospasm laryngeal dystonia which produces spasms that made her choke arm
dystonia leg dystonia abdominal dystonia so this is an example
of how intense the spasms and the crisis can be in these cases the spams
are so strong that can even damage the spine or in some cases some some of my
patients even broke a rib so if you treat people with dystonia you are gonna
encounter three main Dysconnections the first
one is the in Interhemispheric Dysociation you’re going to see that the
what their right side of the brain and the left side of the brain are doing
they they don’t know what the other side is doing so this this disconnection
between the right and the left hemibodies produce certain very specific
symptoms like the nystagmus or the rapid eye movements to the right
then you see anysochorea one pupil is dilated and the other is constricted diplopia
double vision and walking problems and then you get the second dysassociation as
the top to bottom button to top dysconnection this has not been properly
defined until the moment but I don’t think that dystonia is just a movement
disorder because we encounter in practice is that clients come and the
extremely common that they have G.I. distress they have thyroid
dysregulation adrenal dysregulation they develop
autoimmune conditions so and they have many symptoms that could be
defined as a form of dysautonomia the autonomic nervous system is not doing well
they can get into a freezing response they can also get into
hyperactivity of the sympathetic nervous system so insomnia is common
digestive problems are common so also something very interesting is that it’s
difficult for for ladies affected by dystonia to have children because the dysautonomia affect the ability to to sustain pregnancy so most of them
can get pregnant but they cannot sustain it and if they can sustain it normally
they have long Labor so the third dysconnection the
patient’s have is the social disconnection so the patient feels
isolated this leads to anxiety and depression in the long term so I’m going
to talk about the bases which are the three steps in my program the first step
that the every patient needs to go for is is the reconnection the first
reconnection that you need to do is reconnecting with society
reconnecting with the environment reconnecting with your life the life
that you have before of the day onset of the condition so I always say that if it
would only first you know the patient needs to do is to react you need to
react and take care of yourself that’s why the philosophy of then program is
do it yourself nobody can help you the only person that will help you in the
long term is yourself because I I really believe in self-directed neuroplasticity
the brain can change but it is not possible to do it from outside the
patient needs to change their own brain they need to take the actions to do it
need to work a lot so the therapist is as a person that facilitates the process
providing information and guidance through the process but finally they
treat themselves and they heal themselves so in this case the
reconnection the first step took place and when she came back to the dance because
there was a process that she was a ballerina and after the diagnosis she
stopped dancing and the symptoms got worse and to do the level to develop
what is called asomatognosia she was not feeling properly there was a failure
in the sensory system she was not even feeling the leg so there was a moment
that she burned her leg because she didn’t know that the leg was
there so she reacted and she started dancing again in a wheelchair with
limitations that she started exploring he started in going full movement again
and this produced a very an unexpected outcome because at the end she started
feeling again the leg started restoring the sensation through force movement
through dance and in combination with rhythm this is the that was how she did
the first step and also she reconnected with her passion so this this help to to
take the patient out of the state of depression and this is what I
call in a program the lifeline the patient needs to take the lifeline and
then you can rescue them because having dystonia is like when you are diving in
deep waters and there is a moment that you don’t know if you are diving diving
up to the surface so you are diving down and many patients are they think that
they are diving up but they are diving down so they need a safe line and the
therapist is the one that needs to offer the safe line and it’s very important
that you conduct the patient help the patient to know where is the surface you
need to go in that direction it and social reconnection is the first one and
then we get into the clinical aspects so in this case with work one know the key
issues with the inter hemispheric dissociation so this this brought about an active
asymmetrical tonic reflex so one side of the body was hypertonic the other was
hypotonic so in the first intervention what I did it was always to use a mask
to block the correction and to make things simply for here most of my
clients when they close the eyes they can move way better because that’s an
interesting aspect that’s how dystonia behaves because the brain
dystonia is extremely noisy and at the same time is not able to make
proper sense of the the input so reducing the the activity in the visual
cortex helps reduce the load of tasks in that the brain is developing
And this is a good point to start in practicing in the
dark or practicing with a mask and then we were reconnecting we would switch off
the asymmetrical tonic reflex in the leg because the reflex can be switched
off in different parts of the body and this is the third step of rehabilitation
that is when we do the neuromodulation once that I was able to switch over the
primitive reflex we could start doing the reeduction of the movement so the
patient started to do retuning of the cerebellum and the vestibular system
so she needed to relearn to walk after 18 years in a wheelchair and she was
able to do it in four days so that that was something that was surprising
because and told me something it looks in dystonia there is no brain
damage looks that the brain remembers it looks that everything is there is in
place you just need to access it and in order to access it you just need to
provide the proper pathway for the brain to connect with the memory so this was
the first day and then I’m going to skip a little bit then we move really fast
into swinging the arms and get into proper motion starting with four steps sometimes there were spasms happening like
that one and so I needed to stop the spasms and keep on continuing the
training so I switched off the spasms stimulating the pathways that were
dormant, this can happen in any part of the body it is another rule of the
program that you can treat an arm in an eye or you can treat a finger in a
shoulder so it’s not tight to location and that was the last thing
I’m gonna skip little bit once that we were able to to walk 20 steps something
unexpected happen is that she has started dancing again and this is
something that I was not expecting so it looks at the brain preserve all the
skills for 20 years almost 20 years 18 years and then once that you connect the
brain happens in the spot that was the last moment or the fourth
session so the four sections in row totally eight hours and she started
dancing so that this is a safe line rescuing the memory
reconnect in the brain and then making a person that was considered disabled
giving back the ability and the essence because dystonia is fragmentation
process so you need to put all the pieces together for the person to be who
they are so one thing that I didn’t say is that she was having problems getting
pregnant and also sustained in the pregnancy and and the moment that she
started walking again dancing again something happened that was like
multiple ripples occurred and she was able to stop using the botulinum toxin
that she was using massively and she got pregnant and sustained the pregnancy
and she had a healthy boy so this is essential because it’s letting us
know that movement rehabilitation is also
affecting the other symptoms of dystonia so you help a person to walk and it helps her to get
pregnant. so, Living with dystonia is a huge challenge because the wave is
always there but if you train the patients if they have proper education
they become really good swimmers and they can have a fulfilling and healthy
life. Thank you so much

24 comments

Wow. How did she have the muscle to do those moves after 18 years in a chair?! I'm so glad to see he includes reconnecting to life/passion as part of his program. That's how you know he's gonna change lives

Doctor Joaquín es un ángel del cielo. Qué emoción es ver estas dos historias tan llenas de sabiduría y superación

this is hope giving, a friend of mine has been struggling with tremors which started in her 35, I am advising this path to her. I just hope there will be enough opportunities for treatment for people! <3 incredible work, my gratitude and salute to Dr Farias!

Dr Farias, thank you for your video and for your work.
I wonder if you have considered the role of the Endocannabinoid system in dystonia?
Is it possible that a deficit of components in diet or the environment could be limiting the functions of the CB2 receptors in the system?

So nice to have someone describe what this condition is like. am a i believe adult on=set generalized dystonia patient although has been cervical mostly but limbs are starting to progress. No one seems to get it except my dr. would love to have the help to get to the point of being who I was physically.

Hi how can I get in touch with you I believe I have cervical dystonia my neck and shoulders just don't stop and my back muscles Contracting I also have chronic TMJ right now I don't know that's part of the problem but I've been to so many neurologist and dentists emergency rooms hospitals can you give me advice at what to do please 🙏🙏🇨🇦🌈

I discovered dr. Moshe Feldenkrais, thank to youtube in 2012. To me, the most inspiring person ever. Today I felt very inspired again watchig your video. Thanks for sharing, hope to know you in person some time.

excellent video and super imformative. Just bought your book and looking forward to reading it

Working on getting over focal distonia of my left hand currently so I am sure it will be a valuable resource

Just see this video and you will have the answer what can cure dystonia and where the problem comes from. https://www.youtube.com/watch?v=He4Rji88hPY Dr. Lee in Korea is able to cure it. Others what i see are good only in theory not in practice.

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