Sensory Tricks
A. Context
One of the real oddities of dystonia is the fact that at some moments, for very brief periods, it seems to disappear. Researchers have noticed this phenomenon and admitted being mystified by it. Patients often report surprise but enormous relief to have those brief moments, but also frustration they do not last.
The family, friends and work colleagues of a person who uses a sensory trick also have expressed surprise and often cynicism, as if since there are times when the dystonia seems absent, that maybe it is not a real problem but just imaginary, malingering, a deception Historically dystonia was for many years treated as only a mental health issue and was classified as hysterical.
Researchers have observed that this phenomenon of the sensory trick, now validated in brain studies as real, may hold secrets to the nature of dystonia itself. Some have speculated that were we to understand not only when dystonia happens but when it suddenly does not, we would know a lot more about the brain -muscle connection in general for anyone.
It may be that the sensory tricks give us a rare window that may yield profound insights for all movement disorders. Here we have a flash of remission that the body can do. The fact that the presentation of the tricks is so surprising is not just that the dystonia is gone for a moment. It is what caused it, often through a situation not deemed remotely related logically or physically to the area affected.
A person may touch the right cheek and suddenly neck muscles on the left loosen, and so dramatically it is as if the two parts were linked by a string. Patients report the touch that loosens or tightens up that neck muscle is so sensitive and immediate – on, off that they feel they themselves are on push-button.
A person who cannot walk with any ease may discover, to his shock, that if he tries to run, he can. A woman whose leg dystonia made it impossible for her to continue running marathons, found to her surprise that she could however still run backwards easily.
A patient who can barely speak above a whisper finds that he can yell so loudly he can rattle windows. A patient who can barely get sound out of the mouth finds that after precisely 12 minutes after drinking a half glass of wine, she can speak normally, but only for a precise number of minutes.
These ‘sensory tricks’ bear study.
B, History
1737– George Friedrich von Jager noticed in his study of neck dystonia that some patients were unable to move their head unless they used their hand to help.
1830– Charles Bell in Britain noticed that one patient with neck dystonia alleviated discomfort by standing with his head and left shoulder resting against the wall.
1850– Guillaume Benjammin Duchenne in France studied neck dystonia and found that patients sometime got relief from a voluntary contraction of all the neck muscles
1880s – Edouard Brissard (1852-1909) finds that sometimes abnormal
posturing is corrected by a light touch to the head.. Henry Meige and Olouis Feinderl later name this a geste antagoniste efficace.
1888– Charot noted that one patient with neck dystnoia and general muscle spasms could voluntarily suppress the spasm though Charoct does not mention how.
1894 – French neurologist Edouard Brissaud noted that sometimes ‘simple mannerisms’ “childish behavior’ or ‘fake pathological movements” could reverse muscle contraction in the neck. He thought the effect was just imagined as he showed photographs of seven patients. The gesture ‘applying the second finger of the left hand to the chin’ came to be known as Brissaud’s sign. He found that some patients could alleviate neck spasm by resting the head against a pillow, or touching the nose or forehead. One of the seven could reduce the dystonia by resting his head against a wall.
1896 – In Britain Thompson showed a photo of four patients all from the same family and all of whom had neck dystonia. One is holding her arms over her had to cup it, although the doctor does not mention the gesture in his paper.
1897 – R. Pauly, a French doctor, studied 3 patients with neck dystonia who used a version of the Brissaud sign. He showed a photo of a patient who reduced the dystonia by placing his hand at the back of his head.
1898 – Italian neurologist Sgobbo described a patient with neck dystonia which he called ‘mental torticollis’ or ‘Brissaud’s disease”. The patient touched her palm against her cheek as a counteracting gesture.
1899– Two French physicians, Nogues and Sirol, described and showed photos of a patient with neck dystonia. The condition was relieved when he put his index finger on the side of his chin, or in front of his ear, or when another person placed a finger on the patient’s face. This patient could also reduce the neck dystonia by wearing a wire device placed around his nose.
1900– Painter Amedeo Modigliani shows some figures in postures that look like dystonia. In several, his partner Jeanne Hebuterne has her head angulated and her hand is touching two fingers to her face in a common alleviating gesture for neck dystonia.
1901 – A French doctor, Dsetarac, took photos of a patient with dystonia of the neck, hand, foot and pelvis. She was able to reduce her spasms by putting her left hand on her chin and her right hand on her right hip. Another patient was able to reduce his neck and trunk dystonia by placing his left hand on his chin and his right hand across his chest clutching his side. Destarac believed the trick effect was not just psychological.
1902 – French neurologists Henry Meige and Louis Clement Feindel started to call these little movements “gestes antagonistes”. In their study Tics and their Treatment” there is a chapter XII ‘Antagonistic Gestures and Stratagems” The doctors said patients sometimes adopted singular attitudes, executed curious gestures and sometimes used elaborate apparatus to reduce their dystonia. They noted that one patient could relieve neck dystonia by touching near his left ear or even before he actually touched the area. Meige at first believed the condition was psychological but came to believe it had a physical basis.
1902– French doctor Joseph Babinski observed patients who used sensory gestures to reduce their neck dystonia and believed the gestures have a physical base. His study shows a photo of man trying to reduce the dystonia by placing his hand at the back of his head.
1904 – In Germany Steyerthal and Solger studied three siblings who all had dystonia. Two in the photos are using a gesture touching the chin with the fingers.
1905– Jeno Kollarits in Hungary studied six patients with neck dystonia. The photos show use of touching forehead, cupping hand over head, or touching cheek to alleviate the dystonia. However the doctor wrote his impression that two of the patients were ‘hysterical”, the term used at the time for dealing with imagined or psychological problems.
1910– Wilhelm Erb in Germany observed that neck dystonia could be relieved by putting pressure on certain trigeminal nerve innervated points which he called Druckpunte. These points link to the jaw, sinuses or eyes.
1911– Oppenheim describing generalized dystonia included illustrations of patients using a geste antagoniste though he did not describe the gestures. In one photo the patient is using a ‘water carrier’ gesture, one hand on hip, the other hand at the top of the head . In the second the patient with trunk dystonia is putting his left hand on his left knee to try to stay erect.
1930– The gestures to alleviate dystonia are now well recognized in medical literature but are given various names. In French one doctor called the gesture geste conjuratoire. In England the term became sensory trick, trick maneuver, corrective gesture or geste antagonisique. In German it was named antagonistische Bewegungne, Brissauds Handgriff, Kunstgriff or Widerstandsphanomen.
1944 – Herz believed that the gesture was a logical physical phenomenon, not an imaginary one.
2001-J. Muller and colleagues studied 50 patients with neck dystonia who had at least one geste antagoniste they used to alleviate the condition. 27 had more than one such geste.
2007 – Stanislaw Ochudlo studied 33 patients with neck dystonia, finding that 58% have a classic sensory trick and 42% use a forcible gesture to make their neck align better.
2010 – Davide Martino studied sensory tricks and found that 84% of patients with neck dystonia and 71% of patients with eye dystonia use them.
2013 – James.T. Boyd studied a patient with neck dystonia who was able to do an unusual sensory trick and reduce the dystonia by tonic left eye deviation, verified by clinical test, video and surface electromyography.
2013 – Vesper Fe Marie Llaneza Ramos noted that the tricks have been named motor tricks, imaginary tricks, forcible tricks, sensory tricks and reverse sensory tricks and proposed they be grouped together into a new classification.
2014 – P Filip studied 81 patients with neck dystonia . In a questionnaire 77% of subjects said they use force to correct an abnormal posture pushing the head to a normal position and 41% said they touch a part of their face or head to get the same effect.
2014 – Neepa Patel studied 154 people with cervical dystonia and found that 89.6% use a gesture to alleviate the condition. It is proposed by Neepa Patel and others that the gesture be called an ‘alleviating maneuvre’ because it is a physically beneficial motion not fake or a trick, and that calling it sensory assumes only sensory input is required. Other researchers point out that calling it a geste antagoniste may not be completely accurate since some of the maneuvers function by pushing with not against the direction of the dystonic pull.
2020– The sensory trick is now so commonly accepted that it is used to help differentiate genuine dystonia from other medical conditions
C. What seems useful to study further
a. types of tricks
Recognizing there are sensory tricks was a breakthrough but more recently researchers have noticed there seem to be two types – the forced trick and the actual sensory trick. When a person cannot lift their head naturally but with their hand under their chin can push it to upright, that action is not deemed a trick but a forced effect. A true sensory trick happens without forcing the result.
Some researchers have reclassified the sensory trick more precisely, not just looking at the term ‘trick’ as above, but at the term ‘sensory’. The French name ‘ geste antagoniste’ that suggested the motion pushed against the dystonic pressure, has also been reassessed because it was noticed that in some cases the patient to get the effect is actually pushing with the dystonic pressure, in the same direction.
Some researchers have noticed that though the trick helps some patients, it does not always work, and it may deteriorate over time. Researchers have noticed that patients often discover a trick often on their own but that a doctor asking about a trick at clinic may suggest to a patient one that does work for him that he had not yet discovered. Sharing a list of tricks might be helpful so patients are aware of what others have found works for them.
Clinical studies have confirmed that what works for some patients may not work for others. Many have noticed that a trick either works or does not, and its effect is binary – nothing or 100%. Occasionally a trick that works for one patient makes the situation worse for another. In that case these have been called ‘reverse sensory tricks’.
Patients anecdotally have noticed more than 2 or 3 types of such tricks. It is possible even that there are seven. The seven may be:
1. the forced trick
2. the forced assist using other muscles
3. the involuntary assist
4. the practical assist of less gravity to resist
5. the classic trick
6. the oddity trick – yell not whisper, run not walk
7. the reverse trick
1. the forced trick- eg. The patient with cervical dystonia can lifts the head up by physically putting a hand under chin and pushing the chin up.
Some patients say this is not really a ‘trick’ for it is just logical use of force.
Some patients with dystonia of the eyelids report that they
often will reach up and physically pull the eyelid open.
Those with dystonia of the hands report that they sometimes
create splints to prevent some hand motions or assist others.
2, the forced assist using other muscles
People with neck dystonia sometimes find that it is easier to lift
the head if the distance to raise it is less, such as if they hunch
their shoulders first. Some find that if they lean over the edge
of a bed, face down, arms dangling over the side,
it is then easier to lift the head. Some find it they lean forward
and make a triangle with their hand resting on a table, it
is easier to lift their head.
Some find that if they bend at the waist, it is then easier to lift
the head. What these motions have in common, that may seem like
tricks, is that they use strong other muscles to assist the
weaker neck muscles. One trick, that involves the person
seated, forming a triangle with the arms on the table and resting
the head on the hands, enables the person to easily lift the head.
This has been called the ‘praying mantis’ trick. What it seems
to use really is the assist of the arms and elbow strength
to assist the neck.
Patients report that it is easier to lift the head if they cup their
hands behind the neck as if putting some of the pressure for the lift
onto the hands.
3, the involuntary assist
Some patients have reported that when they try to lift their head
they find their mouth opens. and it seems easier to lift the head
if they open their mouth. Some find it hard to lift the head unless
they let the mouth open. Though opening the mouth may not seem related to lifting the head, the fact that many people with movement disorders who try to move their head often open their mouths wide shows a high frequency of
this phenomenon and bears study.
Many people without dystonia, when concentrating while doing
a very precise task such as putting dots on a drawing, make click
noises with their mouth or stick their tongue out to one side, nearly
as if the mouth involvement helps with the motion. The fact that some
with dystonia also engage mouth muscles may be useful
to study in terms of the link between the mouth and
brain command for motion.
Opening the mouth wide creates a classic gesture commonly mocked
in the public as a sign of low intelligence, lack of personal control
of the body. From the mundane idea of being surprised the mouth
‘hanging open, or lollygagging, jaw -dropping we notice expressions
in our language that associated sudden opening of the mouth to
loss of normal self-control. Is the control of the mouth related
to neck dystonia? Is it involved in any other movement disorder?
Some patients have reported that when they try to lift their head they
find their eyes naturally squint and the squinting seems to help or
be nearly essential to the head lifting. This oddity is all the more unusual
when it is noticed that to lift the head a person opens the mouth but closes
the eyes. These assists are described as so natural they seem nearly a reflex or instinctive and yet they do not at first appear medically logical. They
suggest that in the brain the messaging to raise the head calls in
other nearby muscle groups to help.
With dystonia of the eyelids, it is more common to have eyes clamp
shut than to have them stuck open. It is possible that the eye close/squint
motion is the more engaged one for life and to alert those muscles is to have the eye close? For survival one might theorize that keeping eyes wide open would be vital to seeing what is around a person that presents danger.
However ability to clamp the eyes shut also seems instinctive to prevent the eye from injury.
When people die, they often die with their eyes
open. Does this suggest that though we relax our eyes in meditation
by closing them, that in terms of muscles the tight closing squint is
the most active eyelid response? A separate study of the orientations of dystonia and its presentation to open or close, stretch or curl is in a later chapter.
Some people with dystonia have reported that when they try
to individually move fingers of the dystonic hand as compared to the nondystonic
hand, something odd happens. One might hypothesize that if a finger
is dystonic, that it will respond less well to commands to bend or stretch.
Normally when such a command is given, only one finger responds but very
subtly a nearby finger may also slightly move, as often
happens between the third and fourth fingers. One might assume that this helping would happen even more on the dystonic hand if one finger was less responsive and others tried to assist.. However some patients with dsytonia have observed that the fingers on the dystonia hand are less likely to help each other, and actually respond more independently. That suggests that dystonia is not just a failure of one finger to respond but a deficit in the natural message of the others to help. The problem with dystonia in that case may be not just in the one finger but
a flaw of the brain command for nearby muscles to assist.
Clinical research has observed a phenomenon called ‘ surround inhibition, the mechanism in skilled motor behavior where a message is sent to one body part to move, and the others surrounding it nearby, are inhibited so only the primary one responds. The patient directs the first finger to bend and only that finger
bends. For typing, playing piano, writing or much other hand
activity, this non responding of other parts is vital. It has been hypothesized
that with dystonia this mechanism is not working. Researchers have said
that involuntary over activation of some muscles leads to a loss
of intracortical inhibition and then a loss of the surround inhibition.
This suggests that with dystonia the other fingers would not be
as suppressed, that they would not get the message to stand down
and would be too active, leading to random firing of motions
not intended. It might be useful to study whether in dystonia of the fingers, the problem is not thatthe other fingers have a loss of inhibition, but that they have too much inhibition- they are not helping out like they normally would.
4. the practical assist of less gravity to resist
People with dystonia often report that it is difficult to balance,
and that in the case of cervical dystonia, the
head feels heavy. They say it is physically easier to rest the head
or body against something. People with neck dystonia may lean against a wall, slouch in a chair to let the head lean against the chair back, or in a cubicle
may rest the head against the cubicle divider. When people
lie down they ‘take a load off’ not just the feet but also
the head, and this relief may be mainly a very logical
physics one. The person is simply no longer obliged to
fight gravity to keep the head upright.
The huge relief the patient feels to lean the head against
something may seem to be a sensory trick. However since it is
logical some may not feel it is a trick.
5. the classic sensory trick – In this trick a gentle pressure on the
cheek, chin or back of head, suddenly relaxes a neck muscle,
The ‘classic trick’ is classic in the sense that it has been seen in drawings
for centuries, and described in novels anecdotally/ The two body parts that are involved are not connected directly in the body core and patients wonder whether they may be linked in the brain.
Brain mapping to see what areas are affected in various movements
shows that with intense use of a given area, such as with musicians
or taxi drivers who need to know a lot of geography, certain brain areas are
more broadly used. Since dystonia often happens precisely to those athletes
or musicians who are extremely adept, who have practised their skill to a
high level, it is likely that the area of their brain being used is also therefore
very large. One hypothesis about the sensory trick may be that the brain
area affected may be touching so closely another area that the messages
from both somewhat overlap.
The overlapping may be of interest to study, not just for physical
proximity in the brain but possibly for more technical reasons
such blood flood, electrical activity connection or neurotransmitter
flow to both. It is likely that there is a logical
medical reason that these two body parts that seem so unconnected
act in tandem during the sensory trick.
Brain area proximities ave been noticed by the public in other situations that are also somewhat surprising, One is for some people foot fetishes where touching the foot seems to cause sexual arousal.
Some tricks in this category have even been given research names.
When patients put any object on the top of their head,
a hat, turban, or a hand, and the gentle pressure suddenly
makes it possible to easily lift the head some researchers have
called this the ‘turban trick’ . This name may be givento not confuse with the
expression ‘hat trick’ which is a hockey expression.
Some patients find that wearing a hood, a coat with a high collar or even a scarf actually makes use of this trick.
Another trick involves putting gentle pressure on the side at the
waist and this action seems to significantly
reduce pain in the neck. It seems to operate as does the classic
trick of hand on cheek, in that the effect is greatest when the
pressure on one side of the body is used to reduce neck tension
on the other side of the body. Some patients find that if they
push gently on their side at the waist with one hand, and put
the other hand on the top of their head, they get a real drop in
pain and neck tension. Since the posture they are adopting for
this effect is one hand on the head and one pushing at the side,
this position has been called by researchers ‘the water carrier”
trick.
Clinical studies have examined at length the classic trick, to determine
how it registers in brain scans and its effect is confirmed. They have
also examined in terms of sensory input whether one or several fingers
can produce the effect, whether the same or opposite side hand produces
the effect, and if the finger of another person of a gloved finger produces
the effect. Studies have found that for some patients the effect of sudden
reduction of neck tension can be produced if the chin is not quite touched
but the finger just hovers near the place of usual touch. They have found
that for some patients even starting to move the finger towards the chin
produces the effect and for some even imagining doing the trick produces
the effect. The last examples where no skin to skin touch is involved create
a very useful area of study suggesting that the brain can in imagining create
an anticipation response which may be linked to muscle memory. If a person
makes a gesture often it seems likely that the brain not only smooths the
processing of the message and gestures but that it also smooths the feedback
loop for what the end result of the motion would be.
The ability of the brain to create a response to an event that has not yet happened
but seems imminent has been anecdotally reported when people at an airport
see a loved one enter through the gates and feel the surge of joy to hug them
even before the hug. The ability of the brain to create some calming response
to remembered pleasures and some alert response to remembered tension seems
little studied in relationship to dystonia but may be a part of the mechansim
of some classical sensory tricks.
6. the oddity trick
eg. the person who cannot walk but can run
eg. the person who cannot run forwards but can run
backwards
eg. the person who cannot whisper but they can yell
eg the person who cannot speak in normal voice but
can speak easily in foreign accent or cartoon character
voice or falsetto
eg. the person who cannot speak in normal voice
except when crying or when talking in their sleep
The nature of these actions bears study. It may be that
the two functions are actually just very different technical
tasks for the body. This does suggest that the specific nature
of brain to muscle commands is intricately prcise. It also
suggests that the problem with dystonia lies not in the muscle
at all, but in the message.. Patients express surprise that the muscles they
thought were not able to function reliably, clearly still can
work like well but only for certain commands.
One patient reported that his eyes clamped shut for any task he
had to do around the house, but that suddenly they opened wide when he
played fiddle but not when he played mandolin or banjo.. He speculated that the precise nature of hand motions required for that task made the message to the brain outside the dystonic problem.
The relationship between dystonia and stress was through originally to
be that stress causes dystonia. It has been noticed in more recent studied
that dystonia is its own phenomenon but that it causes so much
change in daily function that it creates stress. Patients anecdotally
report nearly universally also that facing any new stressor their body
tightens up even more and the dystonis worse. This may be explained
by the fact that normal stressors usually tense the body up for fight or flight
and that with dystonia when a muscle is already tense, a new stressor simply
adds to that tightness.
Patient report that normally when a body is tensing up, the brain interprets
that as crisis so dealing with dystonia also involves self -discipline to realize
a tense muscle is not a sign of distress. However in a genuinely stressly exterior
situation, the extra muscle tightness is widely reported. However there seem to
be some rare exceptions even to that, for situations of extreme anxiety. One
patient with blepharospasm reported that his eyes clamped shut for nearly every
activity for years with the exception of when he was very nervous walking into
a doctor’s office, and the time when he was very nervous preparing to walk his
daughter down the aisle at her wedding. On those occasions his eyelids sprang
open, just for that short interval. Some with vocal cord dystonia have noticed
that when they had to call 9-1-1 for emergency care of their child, their voice
was suddenly normal. This override phenomenon in extreme crisis, where the
dystonia seems momentarily gone amazes most patients. However the logical
explanation may be that in times of extreme crisis, the message from the brain
is not the same as for daily life. In times of extreme crisis it may be that
the message is routed differently, and taps into other brain areas
not touched by dystonia. This may operate similarly to how a person
can with help lift a car off an injured person with much more strength than they
thought they had. It may suggest that messages from the brain to muscles have
in extreme crisis alternate pathways to assist with motion. This aspect
of what seems like a sensory trick also merits study.
7. the reverse sensory trick – Sometimes a trick that
some find useful, but that for others causes increased discomfort.
In scientific study it is compelling to look at what happens
and ask why. In mystery solving however it is also useful to
look at why something does not happen. In one crime novel
the detective, questionning witnesses found that no one had
heard the dog bark when the intruder entered. The clue was
the absence of barking – the intruder was known to the dog.
In a similar way studying sensory tricks may give answers both
for when they happen and when they do not. A look at reverse sensory
tricks is contained in a separate chapter of this study.
b. direction of the push
One area of potential study is the direction of the push to achieve the sensory trick, The trick has been called ‘geste antagoniste’ as if it is contrary to the dystonic pressure.
The classic sensory trick involves reduction of muscle tension on one side of
the body by pressing in on the chin or cheek of the opposite side. Some patients
have observed an oddity of this. If dystonia is a strong pressure to tilt the head
left and the sensory trick on the right cheek suddenly reduces it, one might
speculate that the trick would help push the head to the right. However
patients have noticed that the push is actually also to the left. This is in the
same direction as the dystonia pressure which they find so unpleasant. What
the sensory trick direction may suggest is that the body on experiencing
dystonia instinctively responds to try to right the head, constantly and on
its own. The self-correction as a strong push to the right then creates opposing
forces as many patients report, that the dystonia seems to be a fight between
two strong messages inside them. The sensory trick may have an effect
ironically to for a brief moment give the natural body push to the right
a respite. In essence that would mean that the sensory trick calms
not the dystonia as much as the intense crisis response to the dystonia,
This hypothesis merits study.
c. timing
Another area of potential study is timing and the sensory trick. Some patients have reported that any new position of their body is comfortable for about 45 seconds, after which time the muscle tension and pain set in, causing them to move to a new position. This comfort then discomfort cycle repeats itself several thousands times a day but there are brief respite times when the pain is less, within each cycle. One hypothesis is that a person can extend the period of comfort if they keep always moving to a new position earlier, possibly every 30 seconds, before the pain actually comes back. This hypoethesis is supported by patient reports that if they dance, the dystonia seems gone. Dancing requires change of body position often more frequently than every 30 seconds so it would permit a person to be in that window of no pain, for quite a while. The relationship between music, rhythm and dystonia is examined in a later chapter.
d. distraction
Another area of possible study would be distracting the brain with another compelling priority besides the dystonia. Some have reported that if they hold an object in their hands, any object, even a tin, can, their hand dystonia is less. Some report that their jaw dystonia is less if they have a spoon, toothbrush or toothpick in their mouth. It may be useful to study if stimulation of the brain with another muscle message, helps momentarily disrupt the dystonic message. It may be that reminding the brain of a more normal sensation helps trigger its more normal muscle function.
D. Comments
from clinical studies and researchers
– Better appreciation of the sensory trick and the mechanisms of the sensorimotor interactions underlying it may provide clues and open new avenues for treatment
– The mechanism of action of the gestes antagonistes is still unknown
– The often bizarre or apparently inconsistent nature of dystonia has often contributed to the confusion
– The physiologic mechanisms behind the sensory trick are unknown
– The sensory trick has rarely been the subject of clinical, physiologic or epidemiologic studies
– The sensory trick remains a fascinating and poorly understood phenomenon
– The usefulness of the sensory tricks remains a mystery
-Unfortunately the effect of the geste antagoniste is temporary and full symptoms return as soon as the stimulus is removed
from patient experience
Somehow it is easier if I speak falsetto, fake an accent or talk babytalk
Sorry but it helps if I walk backwards or dance. Mind if I dance?
When I speak falsetto so it is easier, people hang up on me
At lunch with my boyfriend or a Zoom meeting or driving my car, the tremors left
Eventually to be able to do nearly anything, I had to touch my face
I found that my neck spasms were relieved when I had my hands by my face
I put my hand up to hold my head when I walk
I sometimes hold someone’s arm with one hand and my neck with the other
I was unconsciously putting my hand to my face to stop the neck from pulling
I’d manage the symptoms by putting my hand under my jaw or at the side of my face
If I crouched down, I could only get up with the help of my arms
It helped if I put my hand up to hold the back of my neck
It was hard to get dressed and eat and type with one hand so I could touch my face too
The tremors did not happen when I was conscious of being watched
The tremors started up when I was absorbed in doing other work
To hide the tremor I’d lean on counters or stand on one leg
With both hands occasionally I could open one eye at a time
When I lay down, I felt fine. My dizziness and shakiness left and my neck was fine
When the leg spasm is bad I hold my leg and the pressure seems to help
Finding sensory tricks now proves more difficult
E. List of sensory tricks
An informal survey of patients was done on social media about what tricks people had discovered. This list was augmented by revelations from patient biographies, anecdotal reports, and from clinical studies. These are instances when the dystonia seemed less.
reported in many types of dystonia
-touching cheek
-pressing down on thigh
-touching back of head
-touching chin
-dancing
-whistling
-yawning
-coughing
-counting backwards
-reading a book
-working at computer
-burping
-singing
-bending forward at the waist
-chewing gum
eye dystonia
-looking downwards
-pulling upper eyelid
-pulling eyebrow
-touching face beside eye
-applying slight pressure to eyelid
-humming
-painting
-drinking cold liquid
-touching forehead
-wearing tight goggles
-blowing out the cheeks
-sucking in
-massaging the cheek bones
-pinching back of neck
-touching nose
-wearing cap or turban
-gently covering the eye
-playing a musical instrument
jaw, mouth dystonia
-putting a straw, toothpick, tongue depressor or pen between the teeth
-brushing teeth
-flossing teeth
-touching tongue to roof of mouth
-touching lips
-kissing
-biting a piece of plastic
-bending the neck
-biting the lip
vocal cord dystonia
-speaking in falsetto voice
-shouting
-singing
-smiling when speaking
-having loud radio noise on in background when speaking
-standing when speaking
-grimacing
-talking in baby talk
-having a sip of wine before speaking
-talking extra loudly as if angrily
-laughing
neck dystonia
-touching temple
-touching between the eyes
-touching the eyebrow
-touching top of the head
-pinching the neck
-touching centre of cheek
-touching skin in front of ear
-leaning elbows on an armrest
-looking at oneself in the mirror
-touching nose
-touching crook of jaw
-touching back of neck at base
-touching middle of ear
-visually fixating on some object
-taking my hair and putting it to one side
-focusing on a stationary object while walking
-wearing a collar
-wearing a scarf
-resting the back of the neck on a wall or cushion
-cupping arm around head
-scrunching shoulders when walking
-alternating shoulder scrunches when walking
shoulder, arm dystonia
-touching the arm with the other hand
-touching the shoulder with the other hand
-playing pool
-playing basketball
-playing baseball
hand, finger dystonia
-touching the wrist with the other hand
-touching one hand with the other hand
-writing upside down
-immersing the hand a few minutes in cold water
-writing with a closed fist
-holding pen between index finger and thumb vertically
-writing with chalk
-writing with larger motions and swirls
-writing using shorthand
-switching hands to write
-looking in the mirror when writing
-typing
-playing the piano
-digging around in the garden
-using scissors
-doing jigsaw puzzles
-gripping a baseball bat
-holding a golf club
-switching hands to use a screwdriver
-switching hands to brush the teeth
leg, foot dystonia
-walking backwards
-walking up stairs
-walking sideways
-running backwards
-running up stairs
-running sideways
-bouncing ball against wall and retrieving it
-doing jumping jacks
-while walking, putting left hand on left knee and right hand on right knee
-riding a bicycle
-holding hands over the head
-running a track in another direction- eg counter-clockwise
-applying pressure hand to hip
-walking on beach sand
-wearing a low slung backpack
trunk dystonia
-raising arms out from side of body
-swinging arms while walking
-rubbing the back against the wall while walking
-putting books on top of the head
-resting back of head against wall when sitting
-resting back of head against wall when standing
-touching chin with both hands clenched into a fist
-folding arms across chest
-touching centre of sternum
F. How to ask
Source of question ideas-
patient reports, biographies, clinical studies
_________________________________________________________
G. Question categories
presence of trick – changes
forced
assist – intentional – eg shoulder lift
involuntary assist – eg. other fingers
hard to explain- classic
hard to explain – very strange
duration
logic, cause, mechanics
use of trick, practical, how often
use- pain, tremor, position
when it makes it worse
how discovered
H – Questions asked
surveys 4 and 12
I. Results
sensory tricks
4 58 sens tricks 14 24 x long
26 8 sens tricks 8 12 82 2
max no. respondents 58
total questions 36
likely type of dystonia all
percent of all respondents doing survey 58 or 508 or 11.4%
J. Results
(The bracketed item at the end of each question set indicates the survey number and then the question number. eg. 1-3 is survey one, question 3)
1. presence, on -off, number of tricks
-Are there any body gestures or sensory tricks you do that reduce the dystonia?
42.91% Yes
57.09% No (1-6)
-Are there areas of your face or body that you can touch that suddenly make a tight muscle loosen?
58.62% Yes
25.86% No
13.79% Unsure (4-1)
-Are there parts of your body that when you touch them the tremors suddenly stop?
29.31% Yes, often
22.41% Yes but only sometimes
31.03% No
5.17% Unsure (4-2)
-Do you have several locations that enable you to do the trick?
35.71% Yes, there is more than one
26.79% No, I have only found one
14.29% No I have not found any
7.14% Unsure (4-4)
-When the tricks seem to work
12.50% The trick works better if I breathe deeply
25.00% The trick works less if I am stressed
25.00% The trick never half works. It is either on or off
25.00% The trick can work a little bit or a lot or not at all and has gradations
0% The trick works less after botulinum toxin injections
0% The trick works better after botulinum toxin injections
37.50% I don’t need the trick as much after botulinum toxin injections ( 26-6)
2. when discovered
-when first noticed
11.54% noticed a sensory trick within the first month of having symptoms
42.31% I noticed a sensory trick within the first 2-12 months of having symptoms
23.08% Over time I discovered a sensory trick but it took years
9.62% Unsure
17.31% Not applicable (4-11)
-when you discovered the trick
75.00% I discovered it by accident when I was moving around
12.50% I discovered it when I read about it
0% I discovered it when I talked with others who have dystonia
0% I discovered it as the doctor’s office when asked about tricks
25.00% Not applicable (26-7)
3. duration
-How long does the trick last?
31.48% The dystonia is less immediately when I touch the area,
nearly as if I had pushed a button
9.26% The dystonia gets less gradually as I touch the area
53.70% When I stop touching the area, the dystonia returns immediately
11.11% When I stop touching the area, the dystonia is still less for a few moments
0% When I stop touching the area, the dystonia is still less for at least an hour
12.96% Unsure
20.37% Not applicable (4-9)
-duration of the trick
37.50% The trick only lasts a few seconds
37.50% The trick lasts only as long as I keep doing the activity to trigger it
0% The trick works better than it used to
50.00% The trick works less than it used to
12.50% The trick has always worked for me the same way and has not changed
50.00% Some tricks no longer work for me
25.00% When the dystonia moved to a new part of the body, I also
found a new trick
25.00% Not applicable (26-3)
4. change in trick over time
-Has the same trick always worked consistently for you?
39.58% Some days it works and some days it does not
16.67% Over time at least one trick works less or is not working
20.83% Unclear
27.08% Not applicable ( 4-12)
5. forced trick, physically lift limb
-These questions ask about things you do on purpose to deal with the dystonia
47.06% I used my hand sometimes to position my head to look
to one side or forward
29.41% I use my hand sometimes to help raise my head
0% I use one hand sometimes to help the other hand move
5.88% I on purpose use my hand sometimes to help my legs move
17.65% I do not assist my motion by using other parts of my body
11.76% Unsure
11.76% Not applicable (20A- 28)
6. intentional assist – eg shoulder lift to raise head
-Is your pain less if you shrug your shoulders?
6.06% Yes, nearly always
30.30% Yes, sometimes
45.45% No
18.18% Not applicable ( 13-20)
7. involuntary assist – other fingers, scrunch eyes, open mouth
-Do you notice that you are involuntarily doing a second motion to help with the desired one?
50.00% Yes
50.00% No (20A-26)
-Do you experience ways your body seems to assist one muscle that is struggling?
56.25% Yes
43.75% No (20A-25)
-Actions you take to get the effect
14.29% It is easier to lift my head if I close my eyes
14.29% It is easier to lift my head if I open my mouth
14.29% It is easier to lift my head if I scrunch my nose
28.57% Touching my chin reduces some pain
14.29% Raising my arms makes it easier to walk
0% Touching my nose stops facial spasms
14.29% Touching between my thumb and first finger stops spasms
14.29% Putting a coat around my neck reduces neck pain
0% Walking backwards is easier than walking forward
14.29% Touching the crown of my head helps me walk
14.29% Touching my side at the waist reduces pain
57.14% Not applicable ( 26-2)
8. classic trick – touch face, chin, forehead, back of head
-What part of the body creates the trick for you?
11.11% Touching the temple
44.44% Touching the cheek
9.26% Touching the forehead between the eyes
5.56% Touching the eyebrow
40.74% Touching the chin
5.56% Touching the top of the head
24.07% Touching the back of the head
37.04% Touching the base of the neck at the back
3.70% Touching the thigh
3.70% Touching the web between the thumb and the first finger
0% Touching the web between two other fingers
11.11% Touching any skin at all on the body
16.67% Unsure
14.81% Not applicable ( 4-8)
9. situations/ unusual – eg. run backwards
-Activities that affect it
28.00% Deep breathing seems to reduce the dystonia
18.00% Dancing seems to reduce the dystonia
10.00% Doing jumping jacks seems to reduce the dystonia
6.00% Whistling seems to reduce the dystonia
4.00% Counting backwards seems to reduce the dystonia
6.00% Walking backwards seems to reduce the dystonia
0% Playing pool seems to reduce the dystonia
28.00% Unsure
32.00% Not applicable (4-18)
-Have you found relief doing actions like singing, dancing, that defy logic?
26.73% Yes
73.27% No(1-16)
-Motion and tricks
0% I have trouble writing with pen but not with chalk
0% I have trouble writing fine detail but make big flowing curls fine
16.67% I can shovel snow or rake the lawn walking backwards more easily
than when walking forwards
0% I have trouble walking without jerking pauses but can dance smoothly
83.33% Not applicable (26-12)
(only few respondents answered this question)
-Is your dystonia less doing any movements as you play ball?
6.12% The dystonia is less if I bounce a ball and have to run after it
6.12% The dystonia is less if I bounce a ball against a wall and have to run after it
26.53% Unsure
65.31% Not applicable ( 4-20)
-Tricks and voice
28.57% I have trouble speaking conversationally but can yell fine
42.86% I have trouble speaking but can sing fine
14.29% I have trouble singing but can speak well
14.29% I have trouble speaking unless I use a foreign accent or speak falsetto
42.86% Not applicable ( 26-11)
-other actions
0% My dystonia is less if I drink a cold liquid
0% My eyes close when I hum
0% My dystonia is less when I sing
0% My eyes clamp shut all the time except when I do a precise action like
playing fiddle
0% My eyes clamp shut except when I am very nervous
0% My dystonia is less if I wear a cap, turban or headscarf
0% My dystonia is less when I blow out or puff my cheeks
0% My dystonia is less when I burp
0% My dystonia is less when I laugh
0% My dystonia is less when I yawn
0% My dystonia is less if I put a toothbrush or straw in my mouth
33.33% My dystonia is less when I drink wine, beer or alcohol
66.67% Not applicable ( 27-5)
(low number of respondents to this question
-Do your spasms get less or stop when you take some other action?
1.01% My spasms are less if I bend a nondystonic finger
2.02% My spasms are less if I touch my thigh
8.08% My spasms are less if I touch any area of my skin
44.44% There are other actions I have found that reduce my spasms
37.37% Nothing I do reduces the spasms
9.09% unclear
5.05% not applicable (2B-13)
(this question did not apparently capture what ‘other actions’ people do to
reduce spasms)
10. logic and mechanics of trick
-What is your precise hand motion when you do the sensory trick?
23.08% I press in gently with my pointer finger
13.46% I press in hard with my pointer finger
15.38% The trick also works when I use my knuckle
40.38% The trick also work if I use another finger than the pointer finger
or even a group of fingers
13.46% The trick works when I rub the area with my fingers
15.38% Unsure
25.00% Not applicable (4-13)
-If it hurts to touch one area of you body, does pushing the matching area on the other side also hurt?
27.27% No, it usually hurts only on one side
15.51% Yes, often both sides hurt
6.95% Touching the other side at the same time makes the dystonic side hurt less
25.67% Unsure
28.34% Not applicable ( 2A – 32)
-Does your sensory trick only work for the opposite side of the body_ eg. press on right temple and the left neck muscles relax?
22.22% The trick works from the same side of the body to the dystonia
11.11% The trick works from the opposite side of the body to the dystonia
14.81% The trick works on either side of the body to affect the dystonia
24.07% The trick works from a neutral part of the body such as centre of
the forehead, centre at back of neck
22.22% Unsure
22.22% Not applicable ( 4-6)
-When you press in with a finger, can you simultaneously with the other hand feel tiny muscles shifting position?
10.00% Yes I can actually feel with my hand the difference the trick makes
40.00% No I can’t with my hand feel the difference the trick makes
24.00% Unclear
26.00% Not applicable ( 4-15)
-What is the effect of not quite touching the area?
3.92% The trick works even when I don’t quite touch the area but move
my hand to get near it to touch it
3.92% The trick works when I even think about touching the area
9.80% The effect works even if someone else touches that area for me
50.98% The effect only works when I actually touch that area
23.53% Unsure
17.65% Not applicable ( 4-10)
-What direction is the push you are making compared to your dystonia?
8.00% With the trick I am pushing in the same direction as the dystonia
eg. when left when the dystonia is also pushing me left
24.00% With the trick I am pushing in the opposite direction of the dystonia urge
eg. right when the dystonia is pushing to go left
30.00% I just push in and it works to reduce tremors, tightness or pain in
any direction
14.00% unsure
24.00% not applicable (4-14)
-the mechanics of tricks that use touch sensation with the finger
25.00% The trick only works if I touch the skin
25.00% The trick works if I use the pointer finger
0% The trick works if I use another finger besides the pointer finger
12.50% The tricks works if I use the other hand
12.50% The trick works if an oject but not my finger touches the skin
12.50% The trick works if someone else touches the skin
25.00% The trick works if I just hover my hand over the area and don’t
touch the skin
0% The tricks works if I just think about doing it
25.00% The trick works when I touch the skin very lightly
37.50% The trick only works if I press down hard on the skin
12.50% The direction I am pushing to do the trick is the same direction
as my dystonic tilt
37.50% Not applicable (26- 4)
-Do you have dystonia when you play a musical instrument but not when you act out playing it?
6.00% Yes
18.00% No
8.00% Unsure
68.00% Not applicable ( 4-19)
-logic
42.86% The trick seems logical to me
14.29% The trick surprises me but I am sure it is logical somehow
14.29% The trick makes me think my brain is messed up
14.29% The trick reassures me my brain is not messed up and is trying to help
42.86% I have no idea why the trick works
14.29% Not applicable ( 26-10)
11. use of trick – practicality, how often
-when you use the trick
25.00% I do not use the trick when people are watching
25.00% I rely on the trick and often use one hand to do tasks
so the other can do the trick
25.00% I sometimes sneak doing the trick when I am in public
12.50% I cover my face in public sometimes so I can do the trick
50.00% Not applicable ( 26-5)
-when you do your sensory trick, do you wonder if you look strange to others?
26.53% Yes I try to avoid doing it in public
26.53% Yes, I may look odd but it really helps me function so it’s worth it
28.57% No, I am not concerned what I look like doing the trick
6.12% No. I do not look odd doing the trick
4.08% unsure
16.33% not applicable (4-16)
-use
37.50% I have not found any sensory tricks
25.00% The relief I get from the trick is so immediate it surprises me
62.50% The trick enables me to function better
0% My friends are glad I have found the trick
-how often you use the tricks
50.00% I often forget to use the trick and just endure the dystonia
12.50% I use the trick a few times a day
12.50% I use the trick a few times a week
12.50% I depend on the trick and use if often
25.00% Not applicable (26-9)
-use
42.86% Some tricks reduce pain for me
71.43% Some tricks reduce muscle tension
71.43% Some tricks reduce tremor and spasms
28.57% I use one trick for pain and another for spasms
14.29% Not applicable ( 26-8)
12. nature of dystonia before the trick
-Even if the dystonia gives you an intense pressure to go into spasm or shoot a limb out jerkily, do you feel relief just to do that?
13.73% Yes the movements are uncomfortable but they do bring a little relief
5.88% No the movements are not uncomfortable
43.14% No the movements do not bring any relief
5.88% unsure
31.37% not applicable (4-22)
13. applications – different for pain, tremor, position, tightness?
-Does the trick end the pain?
12.07% Yes, immediately and dependably
25.86% Yes but only sometimes
27.59% No
8.62% unsure
25.86% not applicable ( 4-3)
-Is the sensory trick that makes your spasms stop the same one that makes your muscles loosen?
32.08%Yes, the same area reduces spasms and tightness both
13.21% No, one area works better for spasms and another for muscle tightness
35.85% unsure
18.87% not applicable ( 4-7)
-Do some locations affect tremors while other locations end muscle tightness?
19.64% Yes, they seem to be different for different effects
21.43% No, the same location works for tremors or tightness
30.36% unsure
28.57% not applicable ( 4-5)
14. mechanical aid to simulate trick
-Have you ever used a device to imitate a sensory trick?
5.41% Yes
81.08% No
5.41% unsure
8.11% not applicable ( 14-53)
-Have you used any appliance or brace to simulate the sensory trick?
8.33% Yes I tried one and it did work
14.58% Yes I tried one but it was awkward and impractical
14.58% Yes I tried one but it did not work
54.17% I have not tried one
2.08% unsure
12.50% not applicable ( 4-24)
15. effect of medical treatment on the trick
-If you get injections or other treatment successfully do you use the trick less often?
30.61% Yes, with successful treatment I use the trick less often
4.08% No, with successful treatment I still use the trick
16.33% No, treatment has not changed my use of the trick
8.16% unsure
40.82% not applicable ( 4-17)
K. Analysis
Medical literature has identified three types of tricks – forced, sensory trick and times when the trick makes the situation worse. These surveys examined patient reports and categorized the experience somewhat differently but with the same data from patients..
The phenomenon of the tricks seems to have several elements;
-the effect of touch itself, even gentle- and studies about the sensitivity of humans to any touch for reassurance even as infants, and in times of crisis may be relevant
-the effect of rubbing and massage – this seems a different factor and is studied more in question about exercise and coping
-the effect of force – the tricks that physically force moving the body into alignment may not be considered tricks by some patients. They are often in clinical studies and here in the category ‘forced tricks’
-the assistance given by other muscles seems to cross that grey area between voluntary and involuntary. Raising eyebrows, scrunching nose, opening mouth may be done without conscious awareness, as an assist but can be suppressed with effort so are also voluntary. It is not clear if such muscle tightening helps endure pain, or if it actually helps move the dystonic muscle.
presence of tricks
42.91%-58.62% reported they had found a sensory trick
14.29% -25.86%-37.50% -57.09% reported they had not found a sensory trick
when noticed
75.00% discovered the trick by accident
42.31% noticed the trick within the first 2-12 months of symptoms
12.50% discovered the trick by reading about it
11.54% noticed the trick within the first month of symptoms
the nature of the trick – on /off or gradual
31.48% report that the dystonia is less immediately when they touch the
area, nearly as if they had pushed a button
25.00% report the trick has gradations and can work a little bit or a lot
25.00% report the trick is either on or off and never half works
the nature of the trick – dependable or erratic on a given day
39.58% report the trick works some days and some not
trick duration
53.70% report that the dystonia returns immediately when they stop touching the area
37.50% report the trick only lasts a few second
37.50% report it lasts as long as they keep doing the activity to trigger it
change over time
16.67% -50.00% report the trick works less than it used to and 50% report some tricks no longer work
0% report that the trick works better over time
if trick works for tremors
51.72% report a trick that often or sometimes makes tremors stop
if trick works for muscle tightness
58.62% report a trick that loosens tight muscles
one or several tricks
35.71% report they have found more than one trick
26.79% report they have found only one trick
forced trick
76.47% report that they use their hand sometimes to position
the head
intentional assist
45.45% report that to raise their head they do not shrug their shoulders
36.36% report that to raise their head they shrug their shoulders nearly always
or sometimes
involuntary assist
56.25% report that their body seems to try to assist a muscle that is struggling.
50.00% report that they involuntarily are doing a second motion to help with the desired one
logic of the trick
42.86% report that the trick seems logical to them
42.86% report they have no idea why the trick works
specific actions
The type of action that works varies. The range includes:
44.44% touching cheek
28.57% -40.74% touching chin to reduce pain
37.04% touching base of neck at the back
24.07% touching the back of the head
14.29% closing eyes, opening mouth or scrunching nose to lift head
14.29% raising arms to make it easier to walk
14.29% touching waist at side to reduce pain
14.29% putting a coat around the neck to reduce neck pain
5.56% -14.29% touching the crown of the head
3.70%- 14.29% touching the web between the thumb and the first finger
11.11% touching the temple
11.11% touching any skin at all on the body
9. 26% touching the forehead between the eyes
5.56% touching the eyebrow
3.70% touching the thigh
other actions that reduce dystonia
28.00% report that deep breathing helps reduce the dystonia
music, dancing, rhythm
73.27% report no relief when singing or dancing
42.86% report they have trouble speaking but can sing fine
26.73% report that they find relief doing actions like singing and dancing
18.00% report that dancing helps
14.29% report that have trouble singing but can speak well
6.00% report that whistling helps
Music adds an element of quick but predictable rhythm change that may tap a different aspect of the neural connection of both pitch and rhythm. The rhythm shift may prevent the growing pain of a long delay between motions by requiring a shift before pain sets in. Those who speak falsetto, in a foreign accent or in a cartoon voice may be dealing with a slightly different brain to muscle neural connection that adjusts for pitch.
A separate examination of music, rhythm and dystonia is in a later chapter.
specific hand motion
Patients differ on the mechanics of the trick used.
25.00% -50.98% report that the trick only works if they actually touch the area
0% – 44.38% report that the trick works is they use another finger or group of fingers not
just pointer finger
36.54% report that they press in gently or hard with pointer finger
3.92% – 25.00% report the trick works if they don’t quite touch the area
15.38% report that the trick also works if they use their knuckle
13.46% report that the trick works when they rub the area with their fingers
12.50% report that the trick works if someone else touches the skin
0% – 3.92% report the trick works when they even think of touching the area
side of body
The classical trick involves a touch on one side affecting the other side of the body.
24.07% report that the trick works from a neutral part of the body such as centre of
the forehead, centre at back of neck
22.22% reported that the trick works from the same side of the body to the dystonia
14.81% report that the trick works on either side of the body to affect the dystonia
11.11% report that the trick works from the opposite side of the body to the dystonia
The question may have been confusing since 22.22% reported ‘unsure’
A separate examination of orientations of dystonia, sidedness, up -down, stretch- curl is at a later chapter.
occasion to use trick
28.57% say they are not concerned what they look like doing the trick
25.00% -26.53% say they try to avoid doing the trick in public
variations of effect
71.43% report that some tricks reduce tremor and spasms
71.43% report that some tricks reduce muscle tension
42.86% report that some tricks reduce pain
32.08% say the same trick reduces spasms and tightness both
28.57% report that they use one trick for pain and another for spasms
13.21% say that one area works better for spasms and another for muscle tightness
mechanical simulation of trick
54.17% -81.08% had not used a device to imitate a sensory trick
29.16% reported that such a device was awkward or did not work
8.33% reported that such a device worked
reasons for using the trick
62.50% say the trick enables them to function better
12.50% say they depend on the trick and use it often
reasons for not using the tricks
50.00% say they often forget to use the trick and just endure the dystonia
30.61% say that igetting successful medical treatment they use the trick less often
25.00-26.53% say they do not use the trick in public
The sensory trick may hold many secrets to the nature of dystonia.
Lived Experience With Dystonia 