History of dystonia
These items are found in the medical and history literature. The list is not intended to endorse any particular idea. Some of the developments presented proved useful over time and others, less so. Readers are advised as always to seek medical professionals for recent information relevant to their own situation.
460- 370 BC- Hippocrates- wrote of someone with a stiff and painful neck; wrote about manipulations of joints, massage and traction on a wooden table. He referred to contraction of tendons and jaws though it is not clear if he was also referring to tetanus conditions. Hippocrates first introduced the concept of rest as a treatment.
356 – 323 BC Alexander the Great -some statues show an abnormal neck position, bent slightly to the left. Sculptor Lysippus created a sculpture that Plutarch centuries later felt that was accurate about Alexander’s neck
23- 79 AD Pliny the Elder suggested remedies to soften the neck. He was not a physician
100 – 700 AD some ceramic sculptures from the Moche civilization of Peru suggests some physical conditions that look like dystonia
129 AD- 210 AD Galen Greek physician discovered 7 cranial nerves, said that sensory and motor nerves are different.
175 AD Celsus wrote of rigo cervicis. he described a condition where the head was drawn down to the shoulder blades and t he chin to the chest
521 – 597 AD – Colm Cille is a medieval scribe who wrote of the hand cramps of his trade. Scribes used quill pens dipped in ink, standing over an angled surface at 45 degrees and had to make intricate marks with no errors. If they made a mistake they either had to start over or scrape the ink off and wait for it to dry and redo that section.
1100 -William of Norwich writes of an 8 year old with a twisted neck and with her left cheek touching her shoulder
1232 – El Burgo de Osma cathedral in Spain has medieval drawings with dystonic postures
1297 Bernard Blancard, a French scribe has noticeable writing deterioration from 1297 to 1343
1300- Dante Alighieri writes an epic poem, The Divine Comedy, outlining a tour of Purgatoria and Paradiso. In scenes of the Inferno, some of the tortuous figures depicted suggest dystonia
1320- 1282 Nicole Oresme writes of twisted necks noted that necks of some people were thrust or twisted backwards
1440- the printing press was invented by Gutenberg and some scribes no longer had to do intricate writing by hand for each copy of a document
1494-1553- Francois Rabelais in his book “Pantagruel” wrote a satirical description of a condition of ‘wry neck’ with the head bowing of religious hypocrites . He called it ‘tortycolly” It is speculated that his term was a satirical reference to head bowing of some religious hypocrites however.
1536-1614 – Felix Platenus, a Swiss physician, wrote of a spasm with head turns to left or right
1550 – Pieter Bruegel, a painter in the Netherlands, does dozens of paintings of ordinary life, using landscapes and street scenes. He shows peasants at daily activities like skewering a pig, or slicing fish, people who are dancing, begging, drunk, seen from behind, from the side, from the front. In one painting De Gaper, there is a person with an extra wide yawn, gaping in a way that seems like jaw dystonia. The painting was noticed years later by neurologist David Marsden in 1976 and the jaw dystonia was for a time named Bruegel’s syndrome.
1500- Ambroise Pare, French surgeon tried orthopedic techniques. He would put people on a board face down, fasten bands and then strongly pull ‘as hard as possible’ but ‘without violence.’ Often he admitted such tension was not tolerated.
1650- In England there were ‘bone setters’ and most medical doctors considered them quacks. They worked on the idea that small bones had moved out of place and needed to be put back in place.
1640 – Poet Paul Scarron wrote of his own condition of head tilted on his ear and about being among the stiff -necked. He called the condition torticollis. However he said that among those with the condition, he “passed for one of the prettiest.
1670 – The term torticollis has now been used by Swiss doctor
Felix Plater and Dutch doctor Nicolaas Tulius
1700 -it was called for a while shaking palsy
1700-1800- there is evidence that early therapies for the condition included trying out cod liver oil, strychnine, arsenic, morphine, belladonna extract, cocaine, electricity or even at one point putting an affected hand into the belly of a slaughtered animal. The use of some of these treatments doubtless may have created its own side effects which may have contributed to the misunderstanding of the condition for some years.
1713- Bernardino Ramazzini ( 1633-1714) noticed the muscular fatigue that showed in some handwriting, writer’s cramp. He says it is not spasms but muscle fatigue.
1735- Carl Linnaeus – classified all living things and tried to classify some types of movement.
1737 – The twisted neck condition was studied by German doctor Georg Friedrich von Jager who called it by its Latin name, caput obstipum.
1817 – James Parkinson ,an English surgeon and pharmacist classified types of tremor. He studied 6 people with a condition of rigidity, shaking, slow movement and problems walking that he mistakenly thought were due to lesions in the cervical spine. He named the condition shaking palsy. It was later renamed Parkinson’s disease. It is not dystonia. Parkinson’s disease involves the substantia nigra area of the midbrain, is linked to lack of dopamine in that area, is treatable with drugs but it is a serious debilitating disease that can eventually affect thinking.
1820- Justinus Kerner, German physician sees patients who have dry eyes, dry skin, gastrointestinal disturbances and weakness after eating contaminated meat. He calls the culprit sausage poison. It is later discovered that the condition is due to botulinum toxin, which can lead to intense sweating, high skin temperature in a condition called botulism. The bacterium C botulinum is potent and works by blocking nerve function and preventing release of acetylcholine in the brain, leading to paralysis of some muscles. Left untreated the toxin can lead to increased weakness swollen stomach, vomiting and respiratory failure however the same toxin in later years and purified with small doses becomes very useful to temporarily relax muscles.
1830- there was an epidemic of writers’ cramp in the British civil service observed by Charles Bell researcher. It was later observed in typists and telegraphists.
1840- Robert Schumann (1810-1856) told others of his pain and finger stiffness and how it spread to adjacent muscles. He had to give up piano playing in his twenties due to occasional problems with the second and third fingers on his right hand. At the time he blamed over practice and using a hard wooden clavier. Some suggest it may have been linked to to piano students used at the time to stretch fingers.
1840s – French internist Armand Trousseau coins the expression ‘forme fruste’ to identify a partial or atypical presentation of a disease, as contrasted with form pleine, the disease full blown. The expression forme fruste is later used to refer to some ways that dystonia presents itself in some patients, especially wondering if one type is just a lesser version of another type.
1850- Charles Dickens in David Copperfield has one character who had his head to one side “as if it was a little too heavy for him” In David Copperfield he has another, Mr Creakle, who has no voice but spoke in a whisper, suggesting spasmodic dysphonia.
1853 – Romberg reports of a pianist with problems with using the thumb only when playing piano .Romberg noticed dystonia in some musicians who did repetitive movements with their hand. Some observers looked at these conditions and claimed they were occupational neuroses.
1855 – Duchenne describes writer’s cramp
1860s- Ludwig Traube (1818-1876) notices a form of dystonia affecting the vocal cords that he names ‘nervous hoarseness”.
1864- Samuel Solly names writer’s cramp scrivener’ s palsy
1865 – Andrew Taylor Still, rejected traditional medicine in America and started osteopathic medicine. He said that the cause of al disease was dislocated bones, abnormal ligaments or contracted muscles, especially in the spin\e. he used mechanical pressure on blood vessels and nerves. It was found that some of this pressure caused ischemia – inadequate blood supply and necrosis -cell death.
1870- Jean-Martin Charcot classified movement disorders with a clear evidence of physical damage and others with a function evidence in how the person moved but with no visible damage – an ‘organic cause or a functional type of disorder
1871 – it was called athetosis- no fixed posture
1871 – Talkow in Germany and Wood in the US describe the condition
1878 – Bianchi notes a flute player had a fourth finger cramping when playing the flute
1880s – Edouard Brissard (1852-1909) identified that sometimes abnormal posturing was corrected by a light touch to the head.. Henry Meige and Louis Feinderl later name this a geste antagoniste efficace.
1880s- British neurosurgeon Sir Victor Horsley set up a precise numerical coordinate system to locate brain structures. He studied involuntary movements and experimented with removing part of the cerebral cortex. Results found diminished involuntary movements but also reduced voluntary movements.
1880s- Sir James Page, English surgeon noted that ‘bone setters ‘ caused a lot of injuries
1887- Horatio Wood, neurologist in Pennsylvania describes dystonia the eyes and in the jaw
1887 – Researcher GV Poore published a study of a type of dystonia that affects musicians
1888- Charcot identified a case of what seems to have been cervical dystonia in a stockbroker.
1893- Sir William Gowers describes dystonic postures in hands and feet and calls them tetanoid chorea. He draws pictures of a man with spasmodic torticollis. He describes conditions of contractions of the neck and jaw. He notes that people from some professions with often -repeated muscular action sometimes develop the condition and he mentions seamstresses, smiths, harpists, watchmakers, knitters, engravers, masons. Gowers studies writers’ cramp in particular noticing that the disability in writing does not also cause disability in shaving, playing the piano or even in writing shorthand with its longer fluid strokes.
1895 – patients appear with a condition seemingly linked to eating bad sausage, and the toxin they ate is identified as sausage poison, (later called botulinum botulinus)
1895 – David Daniel Palmer founded chiropractic medicine. It was highly controversial. The original premise was that a vertebra had been partly dislocated nerve impulses were impaired, cells got sick and the vertebra had to be repositioned. Chiropractic treatment is not endorsed by many in the medical community however.
1896 – Thompson publishes photos of what he calls ‘wry neck”
1897 – Barraquer Roviralta describes a condition we now recognize as generalized dystonia, calling it athetosis
1900- Brissaud noticed that a light touch to the head sometimes reduced symptoms.
1900- The areas of study of psychiatry and neurology were more separated and movement disorders were no longer assumed to be just psychiatric
1900- Sigmund Freud postulated that many disorders actually trace to emotional conflicts from childhood. Theories developed that dystonia is twisting away from stress or that forced eye closure is desire to close one’s eyes to the world.
1900- French neurologist Henry Meige studies a condition in ten patients with jaw oddities and eyelid closure. Later this is named the Meige syndrome though it gets differentiated into the two separate dystonias. Meige at first believed patients lacked ‘psychical equilibrium’, and suffered from melancholic temperament and emotional stress but in 1910 found evidence that there was an actual change in the activity of the midbrain especially in the basal ganglia. He also observed the sensory trick/ geste antagoniste.
1900- Painter Amedeo Modigliani represents some figures in a posture that looks like dystonia. His common law wife, Jeanne Hebuterne appears in some photos with her head angulated and one of Modigliani’s portraits even has a lady touching two fingers to her face, a common trick of geste antagoniste for torticollis. Many of Modigliani’s paintings show elongation and curvature and torsion of the upper body that resembles dystonia.
1902 – some people thought that it was just an invented disorder related to hysteria and call these ‘hysterical spasms’
1908 – Schwalbe notes some symptoms of cramps, tics and rapid movements in the Lewin family of Jewish siblings. Schwalke noticed that some Jewish siblings have the same type of dystonia and wonders if there is a family inherited nature to that type.
1908- Herman Oppenheim noticed in the condition there are changes in muscle tone alternating between hypotonia (rest) and hypertonia (action). He suggested a name for this dysfunction of tone as dystonia.
1910 – The twisted neck condition was called ‘wry neck’ in English or ‘Nakenmuskelkrampfe’ in German.
1911 – Ziehen thinks that the convulsive actions that increase when a person tries to move voluntarily are not hysterical
1911 – Herman Oppenheim noticed that some his patients aged 5-10 years each had a twisted foot or hand, were very smart, and had developed increased twisting and torsion spasms of the body. They had a similar ethnic heritage and he began to suspect a genetic link. He identified some body positions as monkey or dromedary and thought at first that it was a disorder of the muscles themselves. He named it dystonia musculorum deformans. He studied spasms, tremor and sustained posturing.
1911 – Flatau and Sterling note in some Jewish patients of high intelligence there is a repetitive pattern of jerky movements and progressive torsion spasm
1911 – Ziehen does not find the condition to be hysterical
1913 – Albert Hoffa and Max Bohm studied classical massage such as vibration, effleurage, petrisae and tapotement. They stroked out muscle masses, caught muscles between the fingers and thumb and tried to lift the muscle from the bone. They sometimes hit fingers against the body very fast.
1912 – Fraenkel looks at rapid twisting sustained movement and twisted posture in the pelvis
1912 – Wilson looks at clonic or tic like spasms
1917 – Egon Schiele (1890- 1918 ) was a Paris photographer who has some photos of people with dystonia-like postures
1919 – Edward Schantz cultures the clostridium botulinum and isolates the toxin. Later two strains of botulinum toxin , A and B, are identified
1920- Elizabeth Dicke, a German physiotherapist developed connective tissue massage. She strokes areas with fingertips and felt that this influenced blood supply, released nerve impulses and created reactions ‘in distant organs’.
1922 – Two German physicians, Drs. Hallervorden and Spatz study a serious inherited degenerative disease that can involve muscle rigidity but that is not itself dystonia. It has recently been linked to the PAK2 gene. The disease for a time was named Hallervorden-Spatz disease. It seems linked to increased iron deposits in the brain.
1924- it is discovered that a bacterium is associated with food poisoning. In 1897 food poisoning from bad sausage was named botulism. after the Latin word botulus for sausage. The bacterium is named clostridium botulinum. It is found to be a neurotoxin, damaging nervous tissue. It goes between the nerves and muscles and blocks the impulses, leading to weakness of the muscle or paralysis.
1929- An epidemic of encephalitis occurred in 1915-1925, and was later identified by Dr. Von Economo. There was a rise in incidence of facial, neck and hand dystonia as post encephalitic neurologic complications. Meige had the idea that these conditions are all related and that they may involve the basal ganglia of the brain.
1929- An international neurology association says that dystonia is not a disease of the nervous system however, making it seem again psychological. Other researchers now disagree.
1929- Wimmer says dystonia is not a specific disease but a syndrome
1930- Surgeons try a new technique of heating electrodes inserted in part of the brain to selectively destroy a small area. The pallidotomy procedure is done on the globus pallidus part of the brain and aims to reduce involuntary movements. It has however an unpredictable outcome.
1940s- Milton Trager, a medical doctor, tries to direct treatment to the patient’s unconscious mind. The patient is subjected to oscillation and rocking to get him to gradually relinquish control. This technique was called tragering
1940s – Professor Russell Meyers tried to reduce tremors and muscle rigidity by cutting nerves emerging from the globus pallidus in the brain. but results were not often positive.
1942- Raymond Chandler in ‘The High Window’ describes a character whose head is drawn around to the left angle about 45 degrees and who has jaw contractions
1944 – Motion picture about dystonia musculorum deformans is made by Godhart and Balser at New York Montefiore Hospital
1944 Ernst Herz (1900- 1965) describes 15 patients with dystonia. He takes a film of their movements and studies the movement frame by frame, looking at sustained muscular contractions and a flow of abnormal movements. He suspects it is an organic disease and not psychologically based. He also reviews 100 other such cases in medical literature.
1950- Ida Rolf, a chemist had an idea of manual manipulation to correct posture using gravity. Her program went through ten sessions to correct balance and weight transfer. She believed that if a tissue was restrained and a nesrby joint had to have balanced movement, tissue and joint would relocate in a more appropriate equilibrium. This technique is later called ‘rolfing’.
1950- R. Meyers is the first neurosurgeon to treat movement disorders like dystonia by creating lesions in the basal ganglia of the brain.
1950- a surgical procedure is developed to reduce tremor ss by precise destruction of a part of the thalamus of the brain. Effect on tremors is often positive but the surgery is found to pose some risks for speech or vision. Eventually it is often replaced by deep brain stimulation.
1950s a new drug for severe depression or psychosis is developed and others follow with the same basic chemistry. However these first generation antipsychotics are found to have significant risk of side effects such as tremor anxiety and distress, weight gain, high blood sugar, rigidity and muscle stiffness. Some patients develop slower movement and muscle weakness and some develop and restlessness and inability to sit still. The drugs are recognized as often leading to dystonia and to a later appearing tardive dystonia or tardive dyskinesia that are not immediately recognized until the drug has been taken for a while. The problem partly becomes that dystonia now can be frequently misdiagnosed as a significant mental health problem.
1950 Chicago neurosurgeon Paul Bucy did surgery to remove tremors by inducing partial paralysis in limbs that trembled. He had some success though there was often some loss of motor power.
1951- Dr..Tracy Putnam of New York tried to reduce tremor using surgery by cutting fibers in the spinal cord. However though tremor was relieved, motor power was often also reduced.
1951 – Professor Roland MacKay in Philadelphia theorized that involuntary movements could be relieved by substituting paralysis for the involuntary movement Professor Earl Walker of the Johns Hopkins Medical School experimented with cutting the motor pathway in the midbrain. Patient Joseph Cioppa underwent the procedure for his intense tremor but during the surgery due to a pre-existing infection, it was necessary to cut a small artery inside the arachnoid and the other surgery plans were halted. However the patient awoke no longer shaking, and had not suffered any paralysis, could speak and had normal intellect. Cutting that artery was experimented with later on baboons.
1953 – Patient Donald Warren had brain surgery to assist him with Parkinsonism symptoms and inability to walk or talk. He woke able to speak, had no tremor and the dystonic rigidity of his left hand had changed. The doctors then investigated the use of surgery in the globus pallidus and thalamus for dystonia.
1956 – Dr. H. L. Parker, neurologist said that there is no known treatment of any value for those with twisted backs, necks and involuntary painful spasms. The only possible solution considered was to paralyze the neck in order to stop its involuntary motion. but even then the spasms continued and patients became bedridden..
1959- Zeman studies how some dystonia seems to occur in families
1960 Moshe Feldenkrais from Israel had the idea of working with the brain’s plasticity. He wanted to have patients examine habitual inefficient movements and then make them or ask them to use different motions, very slowly, to retrain the brain. The gaol is to weaken old patterns and establish new ones. He believed that all persons exhibit some abnormal movement. The treatment has not been endorsed by the medical community as having significant benefit.
1964 – motion picture entitled ‘Motor speech disorders” (dysarthrias) is made by the Mayo Clinic
1967- Zeman finds that even within the same family, where there is dystonia there is still a variety of severity and symptoms in what he calls “Formes frustes’
1969-a motion picture “Gait and Musculoskeletal disorders” is made by Wayne State University
1970- there is more attention given to an inherited form of dystonia, though there seem to be two different forms, one in Jewish families and one in non Jewish families
1970- Dr. David Marsden in the UK found much evidence of dystonia having an organic cause and not being a psychiatric disorder. He did electrophysiological studies and said that dystonia is not a type of neurosis. He studied in particular jaw dystonia and eye dystonia – blepharospasm and dubs it Brueghel’s syndrome after the 16 century painter’s works.
1970s- the crisis of negative side effects of some medication for depression and psychosis leading to dystonia is addressed and newer antipsychotics are over time developed. The second generation pills have fewer but not negligible risks of also leading to dystonia.
1970s – there have been 7 types of proteins identified in the clostridium botulinum bacteria and named A – G . It is found that A, B,E and F can create a medical condition called botulism. It is also found that in small doses toxin can be injected in muscles that are tight or in spasm to relax them. Only type A in marketed as a drug at that time.
1970-s Dr. Masaya Segawa of Japan discovers a type of dystonia which is unlike cerebral palsy, gets worse over the course of a day and usually starts in childhood with problems walking. It seemed to run in families. The condition got named Segawa syndrome and later it became evident it is genetically linked to genetic features of chromsoome 14 and of the GCH-1 gene. The condition gets named Segawa syndrome and it is responsive to dopamine. (Dopa-reponsive dystonia)
1970 – Dr. I. S. Cooper neurosurgeon developed a new surgery to relieve muscle tension and rigidity. It involved making a probe deep into the thalamus of the brain and with a frozen scalpel freezing and destroying a small group of cells there.. This cryosurgey posed risks of patient stroke, paralysis on one side of the body or even death but it was fine-tuned over time. By 1971 it had been performed on several hundred children with dystonia.
1972 – Neurologist Dr. George Paulson studied jaw dystonia and eye dystonia in 3 patients in the US
1973 Neurosurgeon I. S. Cooper writes “The Victim is Always the Same” describing his work with children with dystonia musculorum.
1974- TV series Marcus Welby, MD. does an episode “Hell is Upstairs’ about living with dystonia and surgery to address it. The episode is written by Norman Hudis and David Victor.
1975- first International Symposium on Dystonia- held in New York City. It identifies dystonia as a broader category, including some disorders previously thought to be neuroses
1975- Internationally only 6 academic research studies have been done on dystonia since 1960
1976 – Debate ensues about whether writer’s cramp is a form of dystonia, with research by Dr. David Marsden, Dr. M Sheehy and Dr. Stan Fahn. The designation matters to understand the condition and also in reporting incidence of dystonia in the public perception
1976- Samuel and Fran Belzberg set up the Dystonia Medical Research Foundation in Canada to help study and treat and cure dystonia, after their daughter Cheri is diagnosed with the condition. By 1995 the foundation has raised $13 million for such research
1976 – Cooper does a twenty year follow up of over 200 patients who had surgery for dystonia
1976 – in the US Nancy Harris of Los Angeles meets with Dr. John Menkes and they form a branch of the Dystonia Medical Research Foundation. Joined by Dennis Tessler in 1981 they are able to create a network for patients and a funding means for research. The foundation unites patients, families and researchers, permitting researchers to learn more about living with the condition and permitting patients to get questions answered and attend as guest observers at some academic conferences. The foundations have over 35 years funded research developing new medications, surgeries and discoveries of genetic links.
1979- video recording about dystonia-athetosis is made by the University of Oklahoma
1980 Dr. Alan Scott, a San Francisco ophthalmologist found that if a patient had eyes looking different directions, strabismus, (crossed eyes), one way to help them was to cut away the muscle that pulled the eye to one side. However this destroyed the muscle and he found that another way to fix the problem was to inject botulinum toxin to temporarily weaken that muscle. He had an idea then of using the botulinum toxin also on the muscles of people with blepharospasm. This weakened but did not destroy the muscles around the eye for those with eye dystonia.
1980- only 200 academic studies have been published about dystonia
1980- there is not yet a research field called ‘movement disorders’
1980- children with severe generalized dystonia are treated with ablation brain surgery
1980s when early neuroleptic drugs were introduced some who took them over a long term developed dystonia
1980s- Quebec neurosurgeon Claude Bertrand has developed a surgical procedure for people with severe cervical dystonia, where nerves believed associated with the abnormally contracting muscles are severed while other nerves to less affected muscles are left intact. This procedure is named selective peripheral denervation or the Bertrand procedure. However its effectiveness is not established and some patients in follow up studies had significant complications.
1983 -The Dystonia Society (later named Dystonia UK) forms in London. In 2020 it has 3000 members.
1984 – scientific board of Dystonia Medical Research Foundation redefines dystonia as a “syndrome of sustained muscle contractions, frequently causing twisting and repetitive movements or abnormal postures” The committee also sets up a classification system for types of dystonia based on age at onset, body parts affected and likely cause
1984- Dr. Stan Fahn joins others to establish a Classification of Dystonia that encompasses more accurately its forms
1985 in the US the National Institutes of Health awarded 6 grants to study dystonia
1985 – Dr. Marsden and others study dystonia that affects only one side of the body, finding changes in blood flood and in oxygen extraction in the brain areas of the caudate, putamen and thalamus. Though CT and MRI scans are often normal, PET scans reveal areas of unusual activity.
1985 – Donald MacPhee of Scotland sets up the first Dystonia self help group in Scotland and becomes the first employee of the Dystonia Society outside London, serving as Scottish Director. Alistair Newton of Scotland later is named chair of the Dystonia Society in Scotland and becomes a key leader with Dystonia Europe.
1985 researchers develop the Burke-Fahn -Marsden Rating scale FMDRS to categorize dystonia conditions It looks at movement in 9 body regions and rates their severity.
1986 – The Gemelli Hospital in Rome establishes a Movement Disorders Clinic that over the next 15 years studies 4581 patients and sets up a registry for those with dystonia and follows many of them for 15 years.
1987 – Amadys, French Association for People with Dystonia forms. In 2020 it has 1600 members.
1988 – 2nd International Symposium on Torsion Dystonia- NYC
1989 – researchers sequenced a DYT1 gene and found a protein named torsin A that seem involved in dystonia and that can be tested prenatally.
1989 – it has been found that a gene, the DYTI gene is implicated in many cases of early onset generalized dystonia so it definitely has a physical link Some research shows with dystonia there is abnormal probability information in the firing of sensorimotor synaptic connections in the brain.
1989- the US Food and Drug Administration approves use of botulinum toxin Botox BT-A for treatment of eye dystonia
1990- The National Institutes of Health in the US turned down a grant application for dystonia study saying that “dystonia is not an important disease.” When the Dystonia Medical Research Foundation objected and made the case for need for research, the grant was awarded.
1990- deep brain stimulation becomes a common treatment for dystonia
1990- Asociacion de Lluita contra la Distonia a Catalunya forms in Barcelona,Spain. In 2020 it has 250 members.
1990s- the second generation of antipsychotic pills for those with severe depression or psychosis becomes more widespread in the US. These pills have a 6 to 12 fold reduction in their risk of causing dystonia. However some patients still develop dystonia when on them for long periods of time. Risk is highest for older women though the mechanism is not understood. Though 60-70 % of those who develop dystonia when using such pills have only a mild condition, it is often debilitating. Up to 3% of those on such pills develop severe forms of dystonia.
1991 – in North America over 98% of physicians had not heard of dystonia.
1991 – Swedish Dystonia Association forms. In 2020 it has 430 members.
1991 – ALDE Asociacion de Lucha contra la Distonia en Espana forms in Madrid. In 2020 it has 900 members.
1991- estimates are that dystonia is six times more prevalent than Huntington’s Disease, ALS or muscular dystrophy.However estimates of its actual incidence vary widely from 11 per million people to 248 per million.
1992 – Italian Dystonia Society forms. In 2020 it has 250 members.
1992- Danish Dystonia Society forms. In 2020 it has 600 members.
1992 – Second International Congress of Movement Disorders- Munich Germany
1993 – the gene for dopa-responsive dystonia is mapped to chromosome14 and the next year the actual gene involved is identified.
1993 – Northeast England creates an Epidemiological Survey of Dystonia that follows patients for nearly 10 years.
1993 – Croatian Dystonia Society forms. In 2020 it has 250 members.
1993 – Deutsche Dystonie Gesellschaft DDG forms in Germany. In 2020 it has 1700 members.
1993 – Norwegian Dystonia Association forms. In 2020 it has 650 members.
1994 – Swiss Dystonia Association forms. In 2020 it has 6 regional offices and operates in 3 languages.
1995 – Osterreichische Dystonie Gesellschaft forms in Vienna, Austria. In 2020 it has 200 members
1995 – Belgium Dystonia Society forms.
1995- Botulunium toxin Botox trademark developed by Allergan is later used as treatment for dystonia. The FDA approves some uses for it in 2002.
1995 American Bonnie Strauss and her father, Louis Bachmann establish the Bachmann-Strauss Dystonia & Parkinson Foundation. She has dystonia and there is a family history of Parkinson’s. The foundation goes on to raise over $35 million to fund over 235 research grants into these two neurological disorders.
1996 – studies of dystonia at the time indicate cervical dystonia is 8.9 per hundred thousand; the peak age for cervical dystonia is 40-48years; cervical dystonia is more common in women than men by 1.7 to 1; in the greater Vancouver area, cervical dystonia is 14.2 per hundred thousand
1996 – 3rd International Dystonia Symposium changes the official categories of dystonia to include newly discovered genetic types.
1996- Eugene Smith writes “Dystonia; the disease that distorts” outlining the experiences of 35 American and Canadian people with dystonia. The book looks at symptoms, treatments and factors affecting quality of life. Smith is a retired English professor at the University of Washington who at time of writing had had dystonia for over 25 years.
1997- Dr. Ozelius joins other researchers to conduct genetic analysis particularly of young Ashkenazi Jewish children with distinct genetic abnormalities linked to dystonia
1997 -Drs. Laurie Ozelius, Xandra Breakefield and Susan Bressman discover the DYT1 gene, implicated in patients with early onset generalized dystonia. The DYT1 (TORIA) gene was identified as well as a 3-base-pair deletion associated with most cases of one type dystonia.
1997- two more scales are developed to rate the movement ability of people with dystonia. The Unified Dystonia Rating Scale and the Global Dystonia Rating Scale. The Unified Dystonia Rating Scale rates movement in 14 different body regions and looks at not just how severe the problem is but how long the problem lasts. The Global Dystonia Rating Scale also looks at movement for 14 body parts rating severity from 0 to 10. It looks at ten body areas as broad categories including in them eyes, upper face, lower face, jaw, tongue, larynx, neck, shoulders arms, elbows, hands, pelvis, legs, feet and trunk
1997 The first Bachmann-Strauss Patient Symposium is held in the US assembling patients, caregivers and researchers.
1997- researchers found a protein they named torsinA, on the DYT1 gene that seems different for those with early onset generalized dystonia and that seems to have a role in how the body recovers from heat, traumatic injury or chemical poisoning. They also find a DYT1 mutation where three letters of the nucleotide genetic code are deleted in people with early onset generalized dystonia. This 3 part deletion got named the GAG deletion and it seems to result in loss of glutamic acid that is normally found in the torsinA protein. Somehow this seems to interrupt how the neurons can communicate with each other to movement and muscle control.
1998- dystonia plus syndromes were identified, as a rare separate category including dopa-responsive dystonia, paroxysmal dystonia, X-linked dystonia -parkinsonism, and myoclonus-dystonia. They are not primary dystonia.that often seem inherited
1998- Dystonia Ireland forms. In 2020 it has 450 members.
1998- Finnish Dystonia Association forms. In 2020 it has 800 members.
1999 – Action for Dystonia Diagnosis, Education and Research ADDER forms in the UK.
1999- Human Genome Initiative – worldwide structural analysis of human Dan to locate and sequence 100,000 human genes including ones that may be linked to dystonia
2000- the US Food and Drug Administration approves use of botulinum toxin Botox and BT-B Myoblock as treatments for cervical dystonia.
2000- A Musicians with Dystonia program is set up within the Dystonia Medical Research Foundation It is set up by Glen Estrin and Steven J. Frucht, to support musicians, raise awareness of dystonia in the musical community and to facilitate research.
2000 – Research studies look at glucose metabolism irregularities and the cerebellum in patients with eye dystonia
2001 In the US, the Bachmann-Strauss Foundation holds its first Think Tank on Dystonia and Parkinson’s, assembling an international group of researchers, geneticists and pharmacologists
2002 Dr. John Mark studies how, in order to make a motion the brain asks one body part to move but also asks other body parts near it to not move, creating a ‘surround inhibition’ . Theories develop that dystonia involves a malfunction of the message to inhibit those movements not wanted
2002 – US radio talk show host Diane Rehm writes” FInding My Voice” about her journey with spasmodic dsyphonia, vocal cord dystonia.
2002 – Carmine L. Petrangelo writes ” Surviving Dystonia; the truth about this rare and misunderstood disease” He chronicles his experiences with dystonia musculorum deformans, generalized early onset dystonia from a young age.
2002 – Bette Levine writes “Learning, Coping, Living’ about her experiences with cervical dystonia and blepharospasm and generalized dystonia and her resilience.
2002- fourth International Dystonia Symposium, sponsored by the Dystonia Medical Research Foundation and the National Institutes of Health in Georgia, USA.
2003 – Dystonia Medical Research Foundation Canada now has a Toronto head head office and eventually 25 chapters and support groups across the country
2003 – Portuguese Dystonia Society forms
2003- the US Food and Drug Administration approves the use of deep brain stimulation as a humanitarian device exemption to treat chronic, intractable primary dystonia including generalized, segmental, hemidystonia and cervical dystonia. It involves placing a medical device to send electrical stimulation to implanted electrodes in the brain.. The results of deep brain stimulation are frequently positive but the mechanism for why it works is not well understood and the control mechanism requires careful programming.
2003 – Joyce Brennfleck Shannon edits a “Movement Disorders Sourcebook” which is basic consumer health information about several movement disorders with chapters on dystonia and treatments for dystonia. The articles are written by health care professionals, and medical researchers and are part of the Health Reference series to provide high quality health information for the lay person.
2004 – Anthony G. Butler, an epidemiologist in the UK whose wife has dystonia does research studies on dystonia affecting musicians and works with the British Association of Performing Arts Medicine to try to determine the number of UK musicians affected with the condition.
2006 – Dr. Laurie Ozelius and others identifies the THAP1 gene implicated in one rare form of dystonia.
2006 – movie “Twisted” made by a filmmaker, Laurel Chiten who herself has dystonia after a car accident at age 17, features lives of 3 people with dystonia. Shari Tritt has generalized dystonia from birth, Pat Brogan, a basketball coach and triathlon athlete developed it aftera biking accident and Remy Campbell with postural dystonia hadsuccessful surgery. The movie aired on PBC in 2007 to a million viewers and was given 20 free screenings around the US with a panel discussion afterward
2006 In the US the Bachmann-Stauss Foundation hosts its first DBS reunion for patients who have had deep brain stimulation, their families and physicians, to share experiences and learn of research
2006 – documentary “Two Hands; The Leon Fleisher Story” is a 17 minute film directed by Nathaniel Kahn. It tells the story of a renowned pianist with hand dystonia who adapted and eventually regained some lost skills. The film was nominated for an Academy Award.
2006 – RIck and Michelle Staab of Florida establish the Tyler’s Hope Foundation on learning of a genetic link that affects some of their children. The foundation is instrumental in establishing a research centre for dystonia.
2007- genes have been found on DYT gene at 15 points linked to various forms of dystonia
2007 – Research finds in resting state MRIs that blood flow and blood oxygen levels change in some areas of the brain for people with dystonia. Studies are done of the fundamental network links between parts of the body and how those seem altered with dystonia
2007- – Acoustic guitarist Billy McLaughlin admits to having a dystonia diagnosis that challenged his career and led him to change his playing style. A 2004 film crew follows his career resurgence “Changing Keys’ and later leads to his 2007 album “Into the Light’ recording with his left hand.
2007 – Twisted – 54 minute movie by Blind Dog Films with Laurel Chiton, features stories of fellow patients, Pat Brogan, basketball coach, Shari Tritt, and Remy Campbell , artist. Chiton also made a film in 1993 called “Twitch and Shout’ about Tourette’s Syndrome
2007- film “Two Hands’ shows the the journey of pianist Leon Fleisher, born in 1928, and his diagnosis in 1964 of hand dystonia.. The 17 minute documentary documents his decade long struggle. Composer William Bolcom later composes a special concerto featuring the left hand, for Fleisher. The documentary, by Nathaniel Kahn is nominated for an Academy award in 2007.
2008- Facebook groups are set up: Focal Dystonia, and Living with Blepharospasm
2008 In the US the Bachmann-Strauss Foundation establishes an Anti-Dystonia Drug Discovery Program to help produce oral medications to treat dystonia.
2008 In New Jersey, the first Jake’s Ride for Dystonia Research takes place. It is named for Jake Silverman who contracted dystonia at age 10 and underwent deep brain stimulation surgery.By 2014 the ride has funded 23 research grants and 4 movement disorder fellowships.
2009 The Bachmann-Strauss Foundation establishes the first Dystonia Center of Excellence. Eventually four such centers are set up by 2015, in New York, Alabama, California and Florida.
2009 – Facebook sites are set up – American Dystonia Foundation and Dystonia Foundation
2009 – a study of all films listed in the Internet movie data base IMDb on the topic of on movement disorders finds 104 over history, with most about Parkinson’s disease, and Tourette’s. Dystonia is rarely shown and often misrepresented, as a condition of young men who also have cerebral palsy.
2009 -TV producer Rogers Hartmann writes “How the Disease Dystonia Bent my Body but not my Spirit” and is interviewed on prominent US talks shows about the condition.
2009- In the US the National Institutes of Health gives a five year grant to form the Dystonia Coalition to research dystonia. Within two years it has set up 40 clinical centres around the world
2009- Dr. Mark Hallett and others study the physiology of the brain cortex and how the brain handles directions in hand dystonia, doing some activities and suppressing others.
2009- Botulinum toxin Xeomin trademark is developed by Merz as treatment for dystonia
2010- A natural history study of the changes in dystonia over time is embarked on by the Dystonia Coalition. It follows patients for ten years examining data for 3200 people with dystonia from the US, Canada, Italy, Germany, Europe, Australia, New Zealand, Israel. This study generates many new insights into whether and how the condition changes over time.
2010 Research on monkeys examines which areas of the brain are involved in dystonia and finds physical evidence of the condition at several locations
2010- 8 min 30 second film “Twisted” examines life with dystonia. It is made by Emmy award winner Laurel Chiten.
2010 Facebook sites are set up Beat Dystonia Charity Organization- Texas
2011 Facebook sites are set up- Dystonia Europe, Dystonia Friends, Dystonia Awareness
2011- 5th International Symposium on Dystonia- in Barcelona Spain with funding from the European Dystonia Foundation
2011 ABC News Good Morning America does a May interview about dealing with dystonia featuring Dr. Donnica Moore of Women’s Health for Life.
2012 – Facebook sites are set up – Brooklyn Jade’s Living with Dystonia, ST Dystonia, Beat Dystonia – charity group, Neuronauts- group for those with movement disorders
2012 – Former New York City Mayor Michael Bloomberg declares Monday June 18, “Dystonia Call for Action Day” and many Hollywood celebrities participate.
2013 – Dr. Laurie Ozelius finds gene abnormalities linked to dystonia on the DYT25 gene and affecting the way it codes for a GNAlL protein.
2013 Dr. Alberto Albanese publishes a paper redefining dystonia, classifying it using clinical features and causes. These becomes a new international standard.
2013 – Asociata Distonia forms in Romania
2013 – Erwin and Stefanie Jackson of Tallahassee, Florida establish the Brian Jackson Dystonia Research and Discovery Program, in honor of their son Brian. The program is affiliated with Florida State University.
2013 – A design for clinical trials for dytonia is agreed on in the US by the National Institutes of Health, the Dystonia Coalition and the Dystonia Medical Research Foundation with input from academic clinicians and statisticians and pharma companies.
2013 – book “Living in a body with a Mind of Its Own: the emotional journey of dystonia” by Reverend Mike Beck outlines the experiences and ways of coping of a church minister who developed several types of dystonia including blepharospasm and Meige’s syndrome.
2013 – Brenda Currey Lewis writes ” A Twisted Fate: my life with dystonia” outlining her experie3nces with dystonia musculorum deformans from a young age.
2013 Facebook sites are set up -Alice’s Fight for Dystonia Awareness, A Twisted Fate; my life with Dystonia- Brenda Currey Lewis, Dystonia and Me, Dystonia Tales
2014 – Research during PET scans shows the efficacy of some drug treatments for dystonia. Studies show that when a patient taps the fingers, dopamine is released. Brain scans during that motion trace how dystonia involves brain chemicals.
2014 Facebook sites are set up – Raising Dystonia.Dystonia Hero Aidan Fox, Dystonia Awareness Group India
2014- November- webinar Insight Into Dystonia with Dr. JP Bieton and Dr. MH Marion through Dystonia UK
2014 – Dystonie Foerderverein Deutschland forms in Germany
2014 – Neuro Film Festival gives an award to Devin McClernan for his film “Dystonia Devin”
2015 – Tom Seaman, who has dystonia, writes “Diagnosis Dystonia: navigating the journey” outlining his personal story with the condition as well as a technical look at the characteristics of it, treatment options and management of pain, stress, emotions. along with tips for daily living.
2015 Facebook sites are set up – Dystonia Association Support. Dystonia (the closed group). Dystonia Society Scotland
2015- The Bachmann Strauss Foundation establishes an annual Prize for Excellence in Dystonia Research. The first winner is Dr. Xandra O. Breakfield.. The award includes a $100,000 research grant. 2016 Winners of The Bachmann Strauss Foundation Prize for Excellence in Dystonia Research are Dr. Susan Bressman and Dr. Laurie Ozelius
2015- Dr. Richard Dewey Jr of University of Texas, Southwestern creates a portable set of sensors, APDM Mobility Lab. The six sensors, placed on the limbs, chest and lower spine track gait, stride, balance, rotation and efficiency of movement in the torso and upper and lower limbs.
2016 – Three medical doctors write “Living well with dystonia: a patient guide”: Drs. Daniel Truong, Mayank Pathak and Karen Frei who give a medical introduction to the causes, genetics, types of dystonia and treatments including a survey of ways to cope and rehabilitation exercises.
2016- short film “Demystifying Dystonia” is made, giving background to the condition from the Dystonia Foundation
2016- Botunlinum toxin Dysport trademark is developed by Ipsen and used to treat dystonia
2016- Webinar on Dystonia with Dr. Florence Chang, through the Brain Foundation
2016 – International Symposium on Childhood Dystonia, Slovenia
2016 – Facebook groups are set up: – Dystonia Awareness Group Central Missouri, and Oromandibular, Blepharospasm and Cranial Dystonia Support Group
2016 – Dr. Cynthia Comelia studies neck dystonia and quantifies its severity. Scales are developed to measure twist and motion while other scales look at nonmotor effects such as quality of life.
2017 Dr. Scott Norris studies if neck dystonia spreads to other body parts
2017- Research studies that found no abnormality in brain function for hand or face dystonia when examined more closely did find special targeted areas of the putamen that had changed. The dystonia was seen to make specific small area brain changes matching precisely what part of the body was affected by the dystonia
2017 Facebook site set up- Dystonia World
2017 – Dystonie-und-Du self help group forms in Germany
2017 Winner of The Bachmann Strauss Foundation Prize for Excellence in Dystonia Research is Dr. Andrea Lozano 2018 Winner of The Bachmann Strauss Foundation Prize for Excellence in Dystonia Research is Dr. David Eidelberg
2018 Samuel Belzberg, cofounder of the Dystonia Medical Research Foundation dies
2018 – Dr. Simonyan and others find large scale network changes in the brains of people with dystonia and are able to find subtle differences between which network changes happen for different types of dystonia
2018 – Dr. Ludlow and others examine vocal cord dystonia, measure its severity and set down clearer universal guidelines for how to recognize and classify it
2018 -in the US, the National Institutes of Health awarded 25 grants to study dystonia
2018 – “Dystonia” movie by Larry Pelletier is a 12 minute sci fi thriller about a patient who meets a genetically modified organ donor named Marie.
2018 – “Dystonia” is a 19 minute proof of concept film by CWC Films and Peter Chiverton. It tells the journey of his wife Margot, a celebrated bassoonist with Australian orchestras, who was diagnosed with dystonia. The Welsh Corgi film is prelude to a 99 minute planned film “Life and Music” currently in production.
2019 -between 2012- 2019, 332 academic research studies have been done on dystonia
2019 – Genetic studies of mice with dystonia are able to determine more closely exactly what brain chemicals and receptors are involved
2019 Facebook sites are set up- Dollars for Dystonia, Dystonia Society Support Group -UK
2019- 4th International Congress on Treatment of Dystonia is held in Hannover Germany
2019 – Cheri Tannenbaum writes “Woman of Few Words: My Creative Journey with Dystonia”. She is the daughter of Sam and Fran Belzberg who years earlier established the Dystonia Medical Research Foundation when they learned their daughter had the condition.
2019 -Botulinum toxin Jeuveau trademark is developed by Evolus, Inc. and used to treat Dystonia
2019- Shane Hartline creates a movie about his experience with dystonia of speech, dysphonia, and goes public on April 16, World Voice Day. The film is called ” Cookie: a film about Spasmodic Dysphonia”.
2019- Horror film “Us’ generates controversy when the main character, a demon named Red, doppelganger of a woman on vacation, has a throaty halting voice. The actor is critized online for seeming to mock people with dystonia of the vocal cords. An online backlash erupts and the National Spasmodic Dystonia Association informs media that the condition does not in fact create a creepy or scary voice.
2019- Dystonia -10 minute short film written by Kenny Wong and directed by Julian Stamboulieh through Beanduck and Athanasy Productions, looks at dystonia of a violinist.
2019 – One film in the” Becoming incurable”series features dystonia. along with two other chronic diseases . The series is described as “A long overdue accurate portrayal of life with chronic illness”
2020 -The Samuel Belzberg 6th International Dystonia Symposium-is scheduled for June in Dublin, Ireland
2020 – Dystonie Family Together is active in the Czech Republic and Slovakia
2020 – Association of Patients with Torsion Dystonia is active in the Ukraine
2020- Polish Society of Dystonia Patients is active
2020- Association Children’s Joy is active in Barcelona, Spain.
2020 – Dystonia Europe now operates 22 national organizations in 18 countries and has 500,000 members
2020 Facebook sites set up through Dystonia Medical Research Foundation include Cervical Dystonia Support Group, Dystonia Support Association, Generalized Dystonia Support Foundation
2020- February- webinar on Clinical Evaluation of Dystonia by ERN- RND
2020- April – webinar on Dystonia and Covid- 19 by Dystonia Medical Research Foundation
2020- May – Webinars on Dystonia and Mental Health and on Cervical Dystonia rehabilitation by Dystonia Europe
2020 May – webinar on Taking Control of your Dystonia- a physiotherapy approach through the Dystonia Society in Australia
2020- June – Webinar on Dystonia during the Pandemic – by Dystonia UK
2020- Dr. Brian Berman studies risk of hand, laryngeal or eye dystonia spreading to other body parts.
2020- Dr. Scott Norris and others research small scale changes in brain networks of patients with dystonia.
2020 – Due to new technology the Dystonia Medical Research Foundation is able to host a multinational webinar entitled “Untangling the Complexities of Dystonia”. The one hour session is viewed by researchers, advocacy groups and patients in many countries and is hosted by Dr. Joel Perlmutter who outlined progress in research about dystonia over the past 40 years
2020 Dystonia UK hosts webinars “Take Control of Your Dystonia” for patients
2020- an online patient driven questionnaire series seeks to describe lived experience with dystonia, as a worldwide anonymous database useful to researchers. Using the Internet and survey technology becomes a new resource to interview patients with complex conditions. The Michael J. Fox Foundation surveys patients about Parkinson’s disease and researchers also use online surveys for patients in rheumatology
2020- June and July – The Dystonia Medical Research Foundation of Canada uses Internet technology to host a webinar for patients on the subject of sleep with dystonia, by Dr, Davide Martino, and pain and dystonia by Dr. Veronica Bruno.
2020 – UK writer Karl Kiddy, author of “Absurdica; the People” 2013 is preparing a book entitled “Warriors of Dystonia” in Belfast. It is in production.
2020- July- webinar on anatomy of muscles in cervical dystonia by Poznan Lab
2020- July- webinar by Tyler’s Hope with Dr. Michael Okun and Dr. Edgar Rodriguez
2020- Sept – webinars on Focal Dystonia by Dr. Kanungo, What’s new with dystonia by Dr. Myasaki, Treating Dystonia by Dr. Fasano, Cervical Dystonia by Dr. Rizek and Dystonia Treatments by Dr. Chouinard – through Dystonia Medical Research Foundation
2020- Sept – webinars on dystonia from Dystonia UK featuring Dr. Peter Moore, Dr. Eoin Murray, Dr. Kathryn Peall, Professor Tom Warner
2020 Sept -Dr. Kristina Simonyan of Harvard Medical School and Dr. Davide Valeriani have developed an MRI diagnostic tool that can detect dystonia. This is the first known technology of its kind to detect the condition on MRI. The AI based deep learning platform compared scans of 392 people with dystonia and 220 healthy individuals and diagnosed dystonia with 98.8% accuracy. Researchers have identified a new microstructural neural network biological marker of dystonia.
2020 October – webinar on patient education through Dystonia Medical Research Foundation and Swedish Neurological Institute
2020 -October- webinar on Anatomy and Assessment of Cervical Dystonia by Dr. Mandar Jog
2020 Dr. Pravin Khemani of the Swedish Neurologist Institute in Seattle, Washington, spoke on an international dystonia webinar outlining recent research. He says dystonia is now thought to be a circuit disorder, and that several areas of the brain seem implicated- basal ganglia, sensory and motor cortex, putamen, thalamus, and cerebellum. 150 genetic links have been identified for the various forms of inherited dystonia.
2020 December — Donald MacPhee of Scotland, who is a native Gaelic speaker, is featured in an hour long documentary about his journey with dystonia, on Scottish Gaelic TV channel BBC ALBA. and later on iPlay.
2020- US actor and writer Shane Hartline, who himself has a mild case of spasmodic dysphonia, releases a film he created, “Cookie,’ about an aspiring actress who also has the condition.
2021- medical writer Stephen Michael Berberich has written a novel “Travis Hunter’ about a soldier’s experience with PTSD and then dystonia. He hopes the novel will raise public awareness about the condition and correct misunderstandings. Berberich’s wife has had dystonia for many years.
2022- Neurological Alliances in Britain, Wales, Scotland and Northern Ireland conducted a survey of 8500 neurological patients, 500 of whom had dystonia, assessing concerns about treatment. The study found that 20% were diagnosed without explanation of the condition being told to them and over 30% were given little information. Patients reported delays in getting appointments with specialists and expressed concern at the lack of mental health care for those with neurological problems. The researchers are calling for establishment of a Neurology Task force to address these concerns.
2022- Writer Monty Raymond publishes a romantic novel comedy “Life and Music” based on his wife’s experience with dystonia.
2022 – Christmas special of TV series Sugar Rush has a contestant who mentions struggles with dystonia.
2022 This dystonia surveys website has now been seen in 99 countries, had 26,519 page views, 10,829 individual views. Full pdf research study has been downloaded 266 times.