 It's much more important for me to introduce her and to show that she has such a solid background from New South Wales University graduating with honors some years ago and going on to do her neurology practice within the system here at St. Vincent's and Royal North Shore before heading over as often as the case overseas, Britain, America, Europe and Dr. Chang's case has been to America where she had fellowships to the Mayo Clinic which is very highly regarded and even more so to Mount Sinai where she had a research fellowship for Estonia Fellowship. We've been very happy to support her research here in the pathophysiology of Estonia and to get that research award from the Brain Foundation Dr. Chang had to compete nationally so you can be very sure that our selection committee doesn't hand them out unless it's a very, very best of the best and that makes it very tough for people competing for funds from the Brain Foundation because we're an independent research funder the biggest in Australia but it means that to gain an award is very prestigious and I'm very, very pleased to be able to have this opportunity to introduce Dr. Chang tonight. Thank you very much Florence. Thank you very much Gerald for that kind introduction. So I just want to thank the Brain Foundation for their kind award and also for this opportunity to give this presentation about Estonia. So I'll just open up my presentation now. So as Gerald said I want the neurologist at the Movement Disorder Unit currently at Westmea Hospital and hopefully with this presentation I'll give you a general overview for Estonia and I'll list out the various types of treatment and its effectiveness but the figures on these slides are only an average and so there's quite a broad range over how people respond to the various treatments. Of course this presentation cannot replace a neurological consultation so I still advise if you're worried that you might have Estonia you should go and see a neurologist for proper consultation and hopefully will raise some public awareness for this condition. So Estonia was initially described by a prominent neurologist in Germany called Oppenheim who described four unrelated Jewish children having a childhood torsion in Estonia back in 1911 and these children all had sustained or intermittent muscle contractions which led to abnormal and often repetitive movements postures or both and to the right is you can see a picture of this description by Oppenheim. However, focal Estonia which is Estonia affecting only one part of the body has not really been recognised as a condition until the 1980s prior to that you were sort of as a stressing juice condition partly because of its rarity and also its reaction and positive response to things such as a sensory trick which I'll talk about later. It's not until in the 1980s where there was consistent abnormal findings during the recording of muscle electrical potential studies that neurologists started to think of this as a brain condition and they also noticed on these studies there was again persistent and intermittent muscle contraction between the muscles that doesn't usually act together at the same time. So with the current definition of Estonia which people notice that it tends to get worse when somebody is trying to perform an action and at the same time the muscles surrounding those muscles that supposed to perform the action actually activates when they're not supposed to and many years later on then people can develop abnormal postures which becomes fixed because of development of contractures. So how common is Estonia? Well we don't know so far in Australia because we don't have the research numbers to be sure but it's a third most common movement disorder throughout the world and based on the North American and European data the Estonia that only affects one body part is as common as 1 in 3,000 to 1 in 8,000 people whereas the Estonia that affects the whole body or generalised Estonia affects 1 in 28,000 people according to American study but the Austrian population study was quite surprising for people above the age of 50 and in their study group they found people 1 to 1.8% of people actually had Estonia and recently it's been a changing the doctors well classified Estonia we mainly look at two main sections number one is what we see in the patients for example the age or onset it's body distribution and how Estonia can evolve over time as well as neurological exam findings and secondly we try to look for the underlying cause which is what we mean by etiology and we're looking for any underlying brain or spinal cord problem and also if it's a possible genetic condition by looking through if there's any positive family history and the pattern of inheritance and that way we'll be able to narrow down the likely cause of Estonia throughout this extensive list and so far through scientists and doctors study of Estonia what do we know about it so there's various ways of studying Estonia either with human studies or animal studies and the various ways are for example measuring electrical potentials and currents within the brain for example using brain magnetic stimulation measures and other measures are looking at functional imaging for example functional MRI it measures the changes in the blood flow within the brain which is thought to be directly reflecting the brain cell activity and during the brain MRI we ask people to perform certain tasks for example that triggers Estonia to see what's going on in the brain and certainly there are ways of measuring the brain chemical levels in the fluid that surrounds the brain and the spinal cord also known as cerebral spinal fluid and also by doing special brain scans that analyzes the chemicals within the brain so the fourth method is looking at the brain under the microscope either in animal models of Estonia or through autopsy or post Morton analysis of the brain through the brain donor program so just going through what we know so far through measuring electric currents and potentials within the brain so in people with Estonia so far we found there are increased excitability not only within the brain but also in the spinal cord and the brain stem as well and there's abnormal brain plasticity and what we mean by this is there is increase of electrical potential during brain cell communication and there's a loss of inhibition or inhibitory control within the brain cells and so therefore this is thought to arise in a consolidation of abnormal motor program which then leads to Estonia but so far it's not certain why abnormal brain plasticity occurs and how it occurs and we know that there are abnormal communication between parts of the brain that receive signals from the body and to the parts of the brain that's responsible for motor programming for example researchers have found people with Estonia have difficulty discriminating two pinprick feelings if they're placed very close to each other compared to normal people or if those two pinprick feelings are separated closely in time compared to normal people and so far with imaging studies we've discovered in people with Estonia there are abnormality in the function of the basal ganglia section of the brain and as well as the cerebellum which is the back of the brain and again the parts of the brain that receive signals from the body and executes action within the body and we also found there is reduction in the connectivity between the cerebellum to the part of the brain as well as abnormal body part representation and processing within the brain and so far people who carry a certain genetic forms of Estonia have these changes in their imaging study and it's interesting that even people who carry the gene but do not have Estonia also have these changes on their imaging study so the question is now whether there's other environmental influences or other genetic factors that might be at play that cause people to have symptoms of Estonia so that's just a picture of for example a functional MRI just displaying on the left hand side normal finger representation in normal people so yellow dot is the thumb and the red square represents a little finger so you can see the representation of the thumb and the little finger in the normal person on the left hand side is quite separated whereas people with hand Estonia they're quite they merge quite close together and almost overlapping so this is what we mean by abnormal body part representation in the brain and certainly ways of studying Estonia is by measuring brain chemicals so we know Estonia can happen when there's abnormal dopamine signal pathway and dopamine is the type of neurotransmitter or chemical in the brain that allows the brain cells to talk to each other so we know when there is a decrease in the production or dopamine in genetically inherited condition called DOPA responsive Estonia that people can manifest with Estonia because of dopamine deficiency and once this is replaced Estonia completely resolves and secondly there are medications that block dopamine receptors within the brain that can also give rise to Estonia if given long term and certainly in some people with very early Parkinson's disease they can actually have foot Estonia probably as part of dopamine deficiency and when this is treated with liver DOPA it tends to resolve so we also know from the new mutations that we discover genetic forms of Estonia there are calcium and chloride iron channel mutations are being linked to neck Estonia and rightus cramp and so somehow calcium and chloride channels can change the cell potential and ourselves talk to each other within the brain and certainly we know certain types of mitochondrial dysfunction and mitochondria is the type of energy powerhouse within the brain cell and so when there's lack of energy or battery to the brain cell they also disrupts the way that the brain cells can talk to each other and certain types of mitochondrial condition can also manifest with Estonia symptoms and fourthly in brain studies looking at inhibitory brain chemical called GABA in Estonia subjects they found there is a reduction in this inhibitory brain chemical so we know for sure there are changes in the chemical within the brain in Estonia subjects and what happens after during the autopsy in Estonia patients so in patients they have discovered damages to certain structures can give rise to Estonia for example the basal ganglia of the thalamus part of the brain called the pride cortex and the cerebellum and top part of the spinal cord but not all Estonias we need to bear in mind the due to damage to the structures I just mentioned and there are really no consistent damage within the brain in idiopathic forms of Estonia and in those people who just have dystonic tremor people have actually found which is brain cell density within the cerebellum and so how do we investigate and manage Estonia so in the way that we I just mentioned how we classify Estonia then we work out a targeted way for investigation and usually it's by a neurologist who's trained in subspecialty of neurology called movement disorders so I'm just going to talk briefly about the management of various forms of dystonia and the first one is about childhood dystonia and as I mentioned we try to look for the underlying cause because treatment of this can is actually the treatment for the dystonia otherwise usually we give a Libodopa trial to see if the patient has Libodopa responsive dystonia and usually the response within a few days quite dramatic with the low dose of Libodopa certainly if we if Libodopa doesn't help then we try anticholinergic medication called artang or trihexiphenidol and various doses depend on how generalized or focal the dystonia is then usually in generalized dystonia for children in the quite large doses and they can tolerate quite large doses and with the addition of aurobacliphon children with generalized dystonia has been shown to have benefits in terms of walking and function and there is also a consideration for botulinum toxin therapy or if for additional therapy to the medications I just mentioned or as main therapy if the child has vocal dystonia and finally if medication and botulinum toxin injection doesn't seem to help then we would consider DBS for generalized form of childhood dystonia so DBS is deep brain stimulation and usually the target is deep in the brain in a region called globus pallidus internal which is a part of the basal ganglia so in terms of response to deep brain stimulation it depends on the genetic mutation of the patient they tend to say those with DYT1 tend to do a lot better than the other genetic forms of dystonia and so far for the DYT1 patients we have seven years of data which has shown sustaining improvement in more than 200 patients and improvement is quite significant about 60% of people improving the clinical dystonia rating scale and a disability score which is what we use to assess their dystonia severity and their function and about 60% of children then later didn't need to continue taking medication for dystonia and around about 90% on average had medication reduction it's known that if the DBS or deep brain stimulation is done early that can be quite useful because as I mentioned before when contractures develop they're irreversible and so the aim is try to do the DBS early to avoid contractions from forming because once it's formed there's markedly less improvement with deep brain stimulation however people still need to bear in mind before going for neurosurgery to think about the risk involved and it's not only the neurosurgical risk it's also the maintenance of the deep brain stimulator device and its pacemaker battery and so there is about 8% chance of fracture of the stimulator lead and 8% chance of battery infection rates for these children so in terms of DBS for what they used to call secondary dystonia due to cerebral palsy so you can see the average improvement is a lot less than the DYT1 form of dystonia run about 22% of dystonia in a functional disability scale the pain has a similar amount at 12 months and it's very hard to predict the individual's response because there's a quite a wide range between no improvement to about 60% improvement and so all these numbers are average figures so I'm going to move on to talk about the characteristics and management of adult onset isolated vocal dystonia so dystonia that we can't find the cause for and dystonia only affect part of the body and so I'm going to talk about neck dystonia, dystonia involving the eyes of vocal cords, writer's cramp, dystonia in the hand that only happens with writing and most of these are what we call sporadic which means it is not inherited in the family and usually they don't spread to other areas however around about 20% or people can later notice and spread to the body region only so with neck dystonia usually the average age of onset is around 50 and people experience involuntary neck or shoulder muscle activation twisting postures or tremors that are irregular and jerky and these things also result in quite a lot of neck or shoulder pain most commonly the cause is unknown but there are other causes as well like Parkinson's disease or atypical Parkinsonism and occasionally medication induced so I'm just going to talk briefly about the management of neck dystonia so the main state of treatment is botulinum toxin injection type A is available in Australia and type B is only available through a special access scheme and available in overseas so it's both equally effective at four weeks after injection and usually the type A1 lasts a lot longer three months compared to type B which is 10 weeks and people the researchers found about a 25% improvement in the neck dystonia rating scale but also similarly in improvement in the disability and interestingly 30 to 40% improvement in the pain scale and the type B toxin which is only overseas have more side effects of dry mouth and trouble swallowing so usually for neck dystonia in general tablet medication usually don't help but there have been some people who found some certain medications helpful such as levodopa or chronazepam and so far there's a Dutch physiotherapy trial whose results we're waiting for to see whether this is helpful for neck dystonia patients and usually if medication and botulinum toxin injections are not helpful and they still have quite severe refractory neck dystonia then we proceed to consider deep stimulation again to the deep part of the basal ganglia called the glopis pallidus and these people then tend to have a lot greater improvement in a severity disability and pain scale compared to the botulinum toxin injection and also improvement in the general health and depression scores and so far there is enough data to suggest this improvement is sustained up to eight years after the brain surgery so moving on to blepharospasm which is dystonia affecting the eyes and so it causes involuntary contraction of the muscles around the eyes and it comes on gradually at the average age of 50 and usually patients notice eye irritation or dryness which then later becomes excessive bleaking and involuntary closure of the eye which is worse when they're doing certain tasks or looking at bright light and some people can be as bad as causing functional blindness and inability to drive and as I mentioned before about 20% of people can notice dystonia spreading to surrounding areas of the face such as the vocal cord neck or arm so the management again is mainly with botulinum toxin injection and this time people notice quite a marked improvement in the majority of patients and last for about three to four months in its benefit and about 10% of people notice transient side effects such as drupiness of the eyes, blur vision, bruising at the side of the injection and about some patients can benefit from a dose of conazepam or trihexylphenidol or tetrabenizine but that's the minority of patients so there has been other therapy that's described to help with blepharospasm if botulinum toxin and medications don't help so there are surgery that can be done to partially section the eye muscles that causes the blinking that some people have found benefit if they don't respond to the previously mentioned therapies and people have tri-lubrication drops but it may or may not help and similarly to this rose color FL41 lens that can be a little bit helpful with light sensitivity and finally there hasn't been a lot of patients considering deep brain stimulation for blepharospasm partly because the botulinum toxin injection tends to do so well and so far there's only nine case reports in a scientific literature but they do improve around about 70 to 90 percent which is quite encouraging so I'm going to move on to talk about spasmodic dysphonia which is like laryngeal or voice box dysphonia and again the average azot onset is around 50 and only comes on when somebody is speaking and interestingly when someone whispers reads out loud things or shouts it does not affect them and so there's different types of spasmodic dysphonia so there's the AD doctor type where the vocal cords come together when they're not supposed to and so that leads to like a strangle voice break in between the boughs whereas the AB doctor where the vocal cords come apart when they're not supposed to leads to a breathy prolonged breathy voice and that happens within the consonants so again management is with botulinum toxin injection usually with ENG guidance to make sure that we are in the muscle at the time of injection and this is a main method or therapy and patients found usually a moderate improvement usually the type that improves the most is the one that where the vocal cords come together and so on average these are studies from I think New York they report about improvement of up to 91 percent of normal so that's up to it's not the average but there are side effects of breathiness and hoarseness that may not come with each injection and the AB doctor type where the vocal cords come apart when they talk patients report their voice quality of improvement of 70 percent of normal and just going to talk briefly about writer's cramp so the average age or onset for these conditions a lot younger at the age of 30 and again only comes on during writing and not when typing or doing other things with the hand and patients can compare not tightness or stiffness of the arm or forearm muscles with writing and that goes away when some of the stops writing and so that can lead to reduced speed of writing and difficultly doing cursive writing compared to printing and similarly hand dystonia can affect other occupations such as musicians blackjack dealers and typists and golfers and this is also known as ip in golfers and similarly can affect the 14 runners and the hand in dartsman and trap shooters and so there's a theory that maybe repetitive hand or foot use might be associated with development of dystonia later on and there has been certainly monkey animal models demonstrating this so just some pictures showing you what some musicians dystonia look like for pianist and violinist flute player and the trombone player and again the treatment is botulinum toxin injection for writers cramp and as we mentioned before side effects could be temporary weakness and bruising as the botulinum toxin injection usually only lasts for two and a half to three months we use a method where we get them to write with the non-dominant hand to look at which muscles we should inject in the dominant hand and that's called mirror dystonia guidance. About 30 percent of people can report some benefit with medications that I mentioned before in addition to benzodiazepines and with musicians dystonia patients about 60 percent improvement with occupational therapy so what they do is they're temporary immobilized finger that is dystonic and then the musicians undergo period of rehab with the occupational therapist and about 30 percent of improvement with trihexin phenodol but this is difficult to use in people who play the brass instrument because it can cause dry mouth and about 40 to 50 percent of improvement with botulinum toxin injection particularly with the finger flexion type of dystonia however with usually with the brass players dystonia of the mouth they need to undergo retraining of their embouchure rather than botulinum toxin injection or medication. So lastly I'm going to talk about psychogenic dystonia it's about one-fifth of all psychogenic movement disorders and it's thought to be the theory behind it is thought to be reaction or the method of coping with either current past stress or trauma and this is not under any voluntary control and so patients are not making this dystonia up and so far it's not well understood how this would lead to to increase connection between the emotional part of the brain and the brain involved in movement preparation and this has been shown in brain functional brain scans in people with psychogenic dystonia and similarly it's also shown there's decreased connection between emotional part of the brain and part of the brain that plans movements however people with psychogenic dystonia which is different from the organic dystonia as I mentioned before people with psychogenic dystonia they have normal brain plasticity and also normal body part representation in the brain so usually psychogenic dystonia can happen intermittently or becomes fixed at onset or sudden onset they can have previous spontaneous improvement and resolution of dystonia often it can happen after just minor trauma and body part affected by dystonia can have changing color temperature associated with pain and how we diagnosis is through knowing what organic dystonia look like and finding that psychogenic dystonia really lack the typical findings of organic dystonia however it causes just as much as significant disability as organic dystonia so so far this condition is quite under diagnosed and under treated because it's under recognized and it's a difficult diagnosis to make because the neurologists themselves have to be quite familiar with organic dystonia which is quite rare as we saw the figures of commonness in the previous slide and in addition there is also a lack of acceptance of diagnosis often in both the doctor and the patient and so this can be misdiagnosed as other organic conditions and can lead to unnecessary surgery or medication trials and it's unfortunate because this condition is potentially curable with inpatient rehabilitation plus or minus psychotherapy and psychiatric support and so early treatment of this condition can lead to increased chance of recovery and usually the treatment involves intense motor reprogramming with the physiotherapist and rehab center that specializes in this and studies have shown there's about 50 to 60 percent of patients who have marked improvement or resolution that is sustained at the follow-up period that two years but just got to bear in mind not all centers are trained in motor reprogramming of psychogenic movement disorders so you have to find a center that is willing and recognizes this condition so I'm going to talk briefly about research studies on dystonia that I have contacts with so far and so leading up from the psychogenic dystonia there is research from the psychiatry department within our hospital looking at how those with psychogenic movement disorder and normal volunteers manage stress and they also compare the methods of treatment where they give from psychotherapy plus or minus the traditional physiotherapy treatment route and the criteria is that they need to be diagnosed by somebody in west minirology with a psychogenic movement disorder and is an adult between the age of 18 and 65 who can read and speak English and have enough vision and hand dexterity to use a mouse in a keyboard and performs on web-based memory tasks so if you're interested in this you probably should let me know and I can give you the contact details so the next one is which I'm helping out with is called dystonia coalition project and this is like an international observation study across the world and we aim to try and recruit 5000 people worldwide and to get a database of DNA medical history demographic medications and physical exam findings and we're recruiting people who have idiopathic isolated dystonia and we follow them up every one to four years with questionnaires about things like depression social phobia and anxiety as well as physical exam findings and just some their medical history again and so far the dystonia coalition has made quite a lot of discoveries in discovering new genes for like dystonia for example so if you're interested you can head to this website to have a look at the publications they put out so far so I'll give you a few seconds to write that down and I'm nearly finished so we should have about 15 minutes for questions later on and if you haven't got this one I think later on are recording this session so you should be able to get this web address later on so the last research project is part of my phd in movement and posture control in dystonia patients so I'm trying to recruit people with writers cramp or neck dystonia and our theory is that dystonia is a difficulty or problem in posture control pathway of the brain because so far in monkey or animal studies they found there's a separate movement control and posture control pathway within the brain so we're going to do surface measurement of muscle activity potentials which is lasting one hour when somebody pushes against the risk against the lever while sitting down and we're going to measure their brain excitability using magnetic stimulation methods which last for one and a half hours and at the brain and my institute hopefully we're going to start doing functional brain MRIs on people with writers cramp and comparing with normal control studies normal control subjects so as I think Gerald mentioned before the internet is not a reliable source of information you really had to pick and choose where you should get your source of information from so these are all the I think the reliable sources of information to get more information about dystonia so maybe I'll move on to questions now so looking at all the questions so far that's been posted Jane was asking should all dystonia patients have a MRI yes I think so um they should at least have a brain and it's a by called spine MRI to make sure there are no structural abnormalities within this upper spinal cord or the brain causing dystonia because that'll um it probably wouldn't affect your management but then it would sort of give you an idea what's causing it and so if it's due to previous childhood stroke for example then possible ways of avoiding avoiding the cause causing further damage later on so then Lucia wanted to ask is there anything known about how DVS helps to revert symptoms so that's a very good question um because it's interesting how DVS revert symptoms in a different speak within different types of dystonia so the ones that are dragging juice the DVS pretty much reverts the symptoms within within 24 hours which is very different from the genetic forms of dystonia like the DYT ones I talked about so the DVS tends to improve the symptoms over a longer period for example three to nine months um and then even slower in other types of genetic forms of dystonia so there must be different underlying the mechanisms that causes dystonia in these three different groups and so so far we don't know exactly how DVS can revert dystonia but we know um it somehow restores the brain plasticity but we don't know how because it's such a complex thing yeah so that's why it's a good question because no one knows and then Brian wanted to ask are we sure that the basal ganglia is a correct place for DVS as a target so I think for the genetic forms of dystonia and childhood dystonia I mentioned before um it seems that they seem to have a very good response to deep brain stimulation and they have long term data showing sustained response so I think it is um the right target um and however I think there are researchers also looking at different targets for dystonia um so it's um I haven't heard of any other targets that's being shown to be better than the glubus pallidus which is the part of the basal ganglia that we were just talking about and then how second question from Brian is how do you feel about the non-invasive technique of magnetic impulses outside the head being used to treat cervical dystonia so yeah this is um like uh theoretically it's a um research project to see if there's non-invasive ways to change the brain excitability through repetitive magnetic impulses so um I think so far it's still a working progress so researchers are still testing to see if that helps people so it's not mainstream therapy yet because it's still under research and then just looking at the next question from Brian what is the life expectancy of a rechargeable metronic neurostimulator so for dystonia it really depends um if somebody depends on the setting uh if somebody is on a higher setting for generalized dystonia for example uh then usually the battery can last only like two to three years but there are ways of changing the setting around so battery can last for about four to five years there's batteries called rechargeable batteries available which then you can recharge every like twice or three times a week and then so you wouldn't have to worry about battery depletion that way try to see what I'm up to okay so question from Ian first question from Ian why is australia so behind in its acceptance of this diagnosis when it is medically accepted in canada us uh europe and the uk so it's a good question I think um um probably because of lack of public awareness um but hopefully with more support groups for dystonia coming up we should be able to raise more public awareness for dystonia and secondly I think also with the lack of electronic medical record system um that's probably why we still don't know the exact um frequency and how common dystonia is in australia whereas I think in centers like the US it's got a pretty uh long history of the electronic medical record system up to 15 years so I'm going to go through the second question from Ian so with only three percent of people with dystonia worldwide why does the psychogenic diagnosis appear to prevail more and more in these cases I'm not sure what okay psychogenic I'm not sure what you mean by that question three percent of people with dystonia worldwide yeah I'm not sure what you mean by that question maybe you could rephrase it and so I can try and answer it again Ian um so I move on to your third question so psychogenic suggests it's a conversion from psychological to physical symptom even if there is no previous history how can this be a valid diagnosis so even if there's no previous history of psychological stress or trauma is what I assume you're talking about so it's a valid diagnosis if the clinical formal dystonia doesn't really fit into what we observe from organic types of dystonia and it's really like a diagnosis made by like a neurologist who is has seen a lot of forms of organic dystonia and we know that from treatment of people with psychogenic dystonia about 50 to 60 percent of them go back to completely normal after reprogramming or physiorehab therapy and so I guess in that point you could argue unlike most forms of organic dystonia which is not reversible with physiotherapy and the psychogenic forms can and so people often argue what the mind can do onto the body the mind can also undo and plus there is no abnormal brain plasticity there so there is a potential for improvement and recovery so okay lots and lots of questions so next question is from Kim so Kim says I have cervical dystonia as does my sister and my daughter and so I call dystonia was spoken about as a later onset condition rather than childhood and how many cases have been found where it appears to be hereditary from birth so yes childhood neck dystonia is relatively less common than those who come on during adult childhood and if there's a positive family history that you were mentioning Kim so it's probably not the idiopathic or type of dystonia where we don't know the cause so it could be how to consider a hereditary form of dystonia and I don't know how many cases were why this is being described but it's certainly less common than the adult form of dystonia you can I don't think there are I think I don't think there are exact numbers detailing how many cases there are in people who have neck dystonia from birth you're going through a list of questions so next one is from Grant Grant says I received a mild traumatic brain injury five years ago about eight months later I started to get symptoms of the pharospasm as then diagnosed with mage syndrome my question is are there any studies of proof that dystonia can be attributed to head injury so I think so far there has been some studies alluding to that dystonia can come on after stress psychological stress or even some minor trauma but so can things like psychogenic dystonia so I think I still have to be sure undergo like a neurological consultation I don't know the exact condition behind and the circumstances behind the minor head trauma so I can't I'm afraid I can't really answer that question because it's a clinical judgment question so I can't answer that online sorry okay lots of questions I got two minutes so I'm afraid I can't answer all these questions but I'll do my best where can I so Paula is asking where can I go to see a neurologist in Australia New South Wales that is familiar with dystonia so besides Westmead I think there are also centres in St Vincent hospital in Sydney that have neurologists familiar with dystonia and also I think Concord Hospital there is also a movement to saw the specialists there and I think those are yeah I think those are the main centres I can that I can think of oh and of course there's also a Royal North Shore hospital as well so the next question is is it common to have both a B doctor and a D doctor spasmodic dystonia and the question is from David so it's it is also possible I think it's around 20 to 30 percent of people with spasmodic dystonia who has both forms of it so it's not that common that's about 20 to 30 percent okay Angela asked does Botox affect bone density if you use long term for nectastonia so I'm not aware of Botox causing osteopenia or osteoporosis for long term use there might be a good research question to do because I don't I'm not aware of any studies that suggest that okay so next one Margo is asking about the postural control research that I'm involved in and so she's asking does this mean the vestibular system may be involved if it is proven to involve postural control and what does this mean for treatment as well as the understanding of the causes so yes I think for nectastonia there has been alluded to that the vestibular system might be involved as well and certainly the of the eyes is quite closely linked to the vestibular system and also with the dystonia can be affected by various positioning of the body such as lying down versus sitting up and standing so certainly I think the vestibular system probably contributes a little to dystonia and probably adapts and adjusts to the changes whatever changes that causes dystonia so yeah I think on this we understand what's causing the postural control difficulties in in dystonia then we wouldn't be able to I wouldn't be able to comment on what it means for treatment yeah so unless we understand it won't be able to understand how to treat it uh so the next one is my son is eight and I think this will be the last question from Kylie my son is eight and has paroxysmal dystonia I find he's worse in winter do you think the cold makes the patient worse so certainly I know during the cold some people might get more psychological or physically stress and people with dystonia have certainly noticed that stress can make dystonia temporarily worse so I do think it's certainly possible okay so unfortunately I can't answer all the questions today so thanks very much for everyone who's participated and thanks for Gerald and the Brain Foundation for inviting me to talk about this my favorite topic well Florence do you hear that yes I think I'm on can you hear me yes oh good Florence we thank you very very very very much for your wonderful presentation whilst I'm involved with all the neurological disorders I don't know of them all that much but I certainly astounded to find how widespread and the varied types of dystonia affects people I thought it was a very small subset of Parkinson's but apparently obviously I can't expect too much I might say that we could give you a little extension of time if you're if you're not committed because there's only a few more questions to go if you'd have my dancing them we have a last we have written a line under the last one and that's from I'll just go to this now the last question was from here Kylie that's 757 so she did get in over the line if you like to think of that in terms of the timing of submitting a question but I was surprised to find that this activity occupational one I always saw the piano players suffered arthritis rather than dystonia maybe and both or either either or or both do you think properly hands not going too well is that always dystonia or is it sometimes oh it's not always dystonia yeah so some people can have overuse and paying associate with it whereas the musician dystonia they tend to be relatively painless and the dystonia comes off pretty much at the very beginning of playing rather than later on during a longer longer practice yeah I understand well they do have to practice professional ones they play a lot and a lot but the other thing that if I go back maybe I'm going too far back in time with repetitive strain injury is that a form of dystonia or no that's um that's what I mean by overuse so there is a lot more pain compared to dystonia and also the repetitive strain injury tends to happen like as people later along and say do the task repetitively rather than dystonia which happens pretty much immediately upon playing yeah or upon doing on the task that their hand repetitively does but I'm thinking all the literatures like in the 80s people didn't know about dystonia so they often call that repetitive strain injury and so I think that the last one was Kylie her son now there is one from day Anna yeah tms safe and so on if we wouldn't mind just dealing with those if you can a little quickly to give people who kindly heard us out and that we did say they could have questions up to later clock thank you oh okay sure so yeah tms is fairly it's quite safe it's been used I think since the 80s for research purposes and I think overseas now it's been used for even treatment for things like depression and various psychiatric conditions so there's possible side effects so some people get discomfort over the scalp where the stimulation occurs and in some people it causes a mild headache but it shouldn't cause anything more severe than that certainly people who have a seizure disorder probably shouldn't probably should be careful before they undergo tms study but I know my colleague has been using tms to study patients with seizures so even I think that's been shown to be relatively safe sorry to silence my fight so I'm gonna go down from Anna's question from down further so David is asking do you know much about usage of palms in terms of neuromodulation stimulator in the help of dystonia apart from invasive deep brain stimulation so haven't heard of that one so I don't know very much about it sorry yeah it could still be in an experimental research phase I think and generally you can tell which one which treatment is actually being scientifically proven by going on to websites such as google scala and looking about there and making sure it's from like a reputable scientific journal but it's just a lot faster to probably ask a health professional so the question after that is after David okay so Mary is asking um about DRD genetic mutation and taking levodopa very successfully very grateful so I'd like to know about levodopa being a treatment for depression and anxiety which in ways was worse than dystonia yeah um and she apparently the levodopa also helped with dystonia and anxiety yes so yeah certainly dopamine is not only a neurotransmitter for the motor system it also is also a neurotransmitter for part of the limbic system which is the emotional aspect of the brain and certainly in patients such as Parkinson patients who suffer quite a lot from anxiety depression as well as slowness and stiffness um taking a levodopa actually helps with both anxiety and depression as well as their motor symptoms so yeah I definitely agree that the levodopa can help with depression and anxiety but yeah depending on the condition because if there's a dopamine deficiency treating that condition with levodopa is the way to try and fix it so not all people with depression and anxiety should be treated with levodopa depends on the course so next one is Kate is asking do you know if the trigeminal nerve affects dystonia um no I don't think so because um with dystonia it classifies the central nervous system conditions so we think it's abnormality arising from the brain or the upper part of the spinal cord so I don't think trigeminal nerve affects dystonia unless somebody gets trigeminal nerve pain which can cause stress and that can indirectly worsen dystonia and then so Joanna is asking I'm 32 year old with dopamine responsive dystonia um based on levodopa my zycomerical cure for me but get return or symptoms with physical illness and stress and just stress and illness can normally do this so yeah definitely stress can cause return or symptoms and physical illness in people so it's also important to address on psychological needs as well as stress as we mentioned several times can worsen symptoms of dystonia uh moving on to next question so is it possible for huh sorry Joe well Kylie yes Kylie that's one that that would be a pretty new line for Kylie thank you oh is it possible for paroxysmal dystonia to go into remission uh so I think with with some forms of paroxysmal dystonia under treatment they can go into remission um if it's due to psychogenic dystonia that can also go into remission so it's definitely possible so yes oh okay that was the last question well thanks everyone for all the excellent questions well thank you very much indeed for Kylie extending your time we know how much pressure you work under on a time basis Florence and thank you for those people who stayed with us for the presentation and if you found that very useful please let us know on the website and tell others you may know about how we're striving to help you as much as we can and of course the missing link always in many areas of medicine as the funds are the funds for research and so raising the money is the next step towards getting a solution to the problem and thank you all very much and good night