Hand, Fingers
A Context – background
This is a common type of dystonia historically. It has had various names and there have been many attempts to explain it, from the psychological to the physical.
It is a condition that can affect only one finger, a few or all, only one hand or both. Some report that it eases after certain exercises while others report that exercise makes it worse. Some report that it started in one place and then spread to other fingers or to the other hand. Others report that it does not spread.
Some report no pain. This is a surprising fact given that those with cervical dystonia report excruciating pain.
The effect on daily life is often profound. Because the hands are vital to so many functions, difficulty moving them can affect eating, dressing, ability to grasp onto objects, ability to write, to use a computer or any button pad bank machines or telephones. It can affect ability to pick up small objects like coins or hairpins, the ability to use scissors, cut with a knife, even to shake hands or wave.
B. Brief History
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.
1297 Bernard Blancard, a French scribe has noticeable writing deterioration from 1297 to 1343
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
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.
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
1864- Samuel Solly names writer’s cramp scrivener’ s palsy
1878 – Bianchi notes a flute player had a fourth finger cramping when playing the flute
1887 – Researcher GV Poore published a study of a type of dystonia that affects musicians
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.
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
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.
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.
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- 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
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
C. What seems useful to study further
1. the location of the problem.
Studies of which fingers or which hand are involved may reveal not just which muscles are affected but what area of the brain is affected to direct those motions. However patients often report that when one finger is not able to bend or stretch as directed, the other fingers seem to try to help. This may suggest that the brain directs motion nost just to one part of the body but to accomplish a goal and that adjacent parts are activated when the first responder is struggling. That aspect of brain messaging may be useful since it suggests not just surround inhibition to keep adjacent fingers from reacting, but surround activation to ask them to react and assist.
2. situations or triggers
This type of dystonia seems quite task specific. Patients with dystonia of the thumb have reported that the problem of the thumb turning in on its own hampers any playing of the piano, any activity at waist level that requires use of the thumb. However they report that other arm positions such a swinging the arm at one’s side do not trigger the dystonia and the thumb in that situation does not curl in. One patient reported that to raise her arm to her head, it was possible to notice precisely when the curling started to happen and when it then affected her ability to shampoo or curl her hair.
The nature of the trigger and what aspects of a motion are difficult may be a useful area of study. Some report that they cannot write with a pencil but can with chalk, that they cannot write normally but can hold the pen well and create motion as intended when they write upside down or looking in a mirror at what they are doing. Some report that they can not write well but then can use scissors or that they can barely manipulate coins but somehow they can still work with puzzle pieces. These oddities bear study.
Historically since the dystonia happens when doing some tasks but not when doing similar others, patients were often mocked as faking the condition or attention seeking. However the variation itself may shed light on muscle and brain function. What seems likely is the brain messaging to muscles is very complex.
-extend or flex the muscle
-what angle to move the muscle in
-how far to extend or flex the muscle – distance needed
-how long to have this response -time needed
-the goal to be attained -what success will feel like -a kind
of anticipatory concept that will give feedback
when the goal is reached. This anticipatory
kind of visualization in mechanical terms
may explain some sensory tricks
-if a motion is difficult, what auxiliary muscles or other skills can be called in to help.
The calling in of help seems both instinctive (when lifting a heavy weight a person naturally shifts body for balance) and planned ( a person may strategize what other help to give).
3.environmental or emotional factors
Historically it was often assumed that stress caused dystonia. This hypothesis stigmatized patients who felt blamed for it and for not healing from it. Though it is now recognized as a genuine medical condition, not hysterical, some patients report that stress can make it worse. Some also report that the impact on their daily life is demoralizing and can cause its own stress.
Does heat or getting a rest affect the dystonia? Does climate affect it? Some report that time of month hormonally may affect it. It might be useful to study those questions to help patients devise effective ways to cope.
4. overuse
Hand dystonia is common in those who have developed a very high skill with that hand motion. The effect on pianists, guitarists, violinists seems the most marked in the ones who intensely practice. A person who makes jewellery, an artist, a typist, a calligrapher seem to be at higher risk of developing the problem the longer they have been doing that activity.
However many people who practise as intensely and for as many years do not develop this condition. It may be useful to study what other factors seem at play. It is easy to jump at personality factors and that line of inquiry has historically often been pursued, if the person is intense, likes to be organized, puts high demands on themselves or if they have suffered a recent emotional upheaval like a death in the family or a divorce. The nature of a dystonia that seems linked to an overuse cause but not directly presents the opportunity to look at other factors that may increase likelihood of dystonia in a perfect storm type of scenario. If several things have to go wrong at once in order for dystonia to develop, those factors may be genetic predisposition, overuse, recent emotional upheaval or even personality type. The interaction may be useful to study. A separate examination of possible causes and risk factors for dystonia is in another chapter.
5. splints and other devices
People with hand dystonia are often very creative. Musicians and crafts people are often very detail oriented and precise in their movements with high expectations of competence. When diagnosed with dystonia they have often already experimented with many answers, as soon as the problem started.
Some of these experiments may be useful to study:
-practising more- this is a common answer for musicians to just work harder on that section of the piece. What many report however is that that strategy in the past which worked so well, no longer makes things easier and in some cases the problem gets worse
-rest for a while. Some report that rest helps briefly but is not a full answer and the dystonia returns. The intervals of rest and effect could be studied
-use a splint or some device to force the affected finger to bend or curl as needed or a device to prevent motion of other fingers, to make this one get stronger. Some patients report that the dystonic pressure seems to come from the brain and is not affected by restrictions of motion of the muscle. The message seems to have a presence or strength of its own. This hypothesis is confirmed when surgery is done on patients to disconnect a muscle or a nerve message to that muscle but after surgery the body starts to exhibit dystonia in an adjacent muscle. The message of dystonia seems to override the details of what muscle is going to respond.
-do gradual, gentle exercise of the muscle, expecting only miniscule progress each week. This strategy recommends slowly, gently trying to move the affected finger but as soon as there is pain or resistance, stopppng. This strategy aims at retraining and some report success with it. It stands in contrast to the strategy of extreme stretching, forcing the muscle even if it hurts, toughening up, ignoring pain, ‘powering through’. The two strategies could be studied. The second seems to not help dystonia.
-think of the task differently. Some musicians report an interesting phenomenon when they are having trouble playing a certain difficult passage. They often are trained to keep doing that passage over and over till they get it right. However some report success with not focusing on the intricacies of that passage at all but focusing on the whole piece, the flow of the music. Some report that thinking larger, trying to get in a different
mood towards the selection can help. It may be that this wider perspective helps the musician simply be less stressed about the passage and helps connect with positive emotions about it. However it may also mark a shift in brain messaging to muscles. Athletes are familiar with the strong effect of mindset during performance. Studies of attention to specific details or to ‘big picture’ performanc also suggest that the brain has specific commands for the second category and that these may not be affected as much by dystonia.
D. Comments from patient experience
early symptoms
An early symptom was numbness in one hand and tremor
At first her hand made a fist on its own but she shook the hand out and it was fine
clenching, curling, bending, cramping
My hands would not open normally
My thumbs and fingers bendtinto uncomfortable shapes
My hand cramps and clenches while my arm pulls behind my body
numbness, tingling, tremor
I tried to hide the tremor by putting my hand behind my back or in a pants pocket
I was getting pins and needles in my hands a lot
grip -problem hanging on
I was so clumsy I was breaking several glasses a week
I dropped things all the time
It was sometimes hard to even pick up a cup
grip -problem letting go
Letting go was not an option fir ne once my fist clenched an object
handwriting
My handwriting got so shaky
sleeping
I had to sleep on my hands so they would not move and keep me awake
effect on daily life
I can’t butter a piece of toast
I chose the career of teaching so I could spend more time talking and less writing
treatment
With treatment my tremors calmed and my handwriting got better
E. Source of question ideas:
patient reports, videos, clinical studies
F. Question categories:
symptoms
daily activities
coping
G. Questions asked -survey number, question number
surveys 11, 31
H. Results
shoulder, arm ,hand, fingers
10 21 shoulder,arm 8 18 85 3
11A 28 hand,fingers 22 33 78 5
11B 15 hand,fingers 8 13 83 2
31 3 shoul hand 12 15 84 2
max no. respondents 21-28
total questions 79
likely type of dystonia shoulder, arm, hand, finger, possibly others
percent of all respondents doing survey 28 or 580 or 4.8%
challenges to do this survey – use of hand, fingers to tap keys and mouse
I. .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. first signs
-Did the dystonia start as you prepared a difficult new musical number?
21.43% Yes
28.57%No
7.14% not sure
42.86% not relevant ( 11B- 5)
2. location
location
3.57% The dystonia affects only one finger
67.86% The dystonia affects several of my fingers
39.29% The dystonia affects my wrist
32.14% The dystonia affects my lower arm/forearm
17.86% The dystonia affects my upper arm
25.00% The dystonia affects part of both of my hands
10.71% The dystonia affects part of both of my arms
0% The location affected changes every few days
32.14% The location affected is the same every day
14.29% The parts of my body affected are beside each other- eg. finger and wrist
3.57% The parts of my body affected are not beside each other- finger and
upper arm
7.14% unsure
7.14% not applicable (11A -1)
These questions ask about playing violin, viola or cello.
0% The dystonia is mostly in my bowing hand- usually the right hand
0%The dystonia affects the wrist of my bowing hand
4.55% The dystonia is mostly in my nonbowing hand- usually the left hand
0% The dystonia affects the 4th finger and baby finger of my nonbowing hand
0% My hand motions are normal as
position
33.33% My wrist curls
33.33% Some of my fingers are curling
33.33% Some of my fingers stick straight up involuntarily
33.33% Sometimes my hand goes into an odd position involuntarily
66.67% One of my shoulders is higher than the other
33.33% not applicable ( 31-3)
(low number of respondents to this question)
3. diagnosis
-These questions ask about medical exams of your dystonia
85.71% The doctor examined my ability to do a range of motions
21.43% The doctor examined me while I was simulating doing the task
where I have dystonia- eg. pretending to type or play the piano
28.57% The doctor examined me while I was actually doing the task where
I have the dystonia – eg. typing, playing my musical instrument
0% I have had a computer based eD movement analysis of my hand motions
doing some activities
7.14% not sure (11B- 11)
4. range of motion
-These questions ask about range of motion and dexterity
66.67% I can easily pick up a coin
33.33% I can easily pick up a toothpick or bobby pin
100.00% I can easily pick up and move a cereal box
66.67% I have trouble gripping small objects
0% I have trouble trying to release grip on some objects (31- 2)
(low number of respondents to this question)
-motions
8.00% I have trouble touching a finger of my left hand to my nose
12.00% I have trouble touching a finger of my right hand to my nose
8.00% I have trouble drawing a circle or spiral in the air with my left hand
16.00% I have trouble drawing a circle or spiral in the air with my right hand
72.00% I can do all of the above motions easily
0% not sure
8.00% not applicable (11A- 3)
5. control of motion – delay, reaction time
-Can you clap your hands in time to music?
88.00% Yes I can do this easily and in time
0% Yes sort of but there is a delay
0% Yes some days but less well on other days
4.00% No it is not possible to do it to match the time
4.00% not sure
4.00% not relevant ( 11A – 15)
-movements
73.08% I can bend my fingers all at the same time on each hand
38.46% I can bend my fingers one at a time on each hand
57.69% When I try to bend a finger, adjacent fingers sometimes
also try to move
3.85% On my dystonic side, the fingers bend more individually than
on the nondystonic side
11.54% The fingers of my dominant hand bend more individually
than the fingers of my less dominant hand
61.54% I can tap each finger one at a time on each hand
26.92% When I try to tap each finger sometimes two will respond at once
19.23% When I tap my fingers individually there is a delay for some of
them to respond
7.69% When I tap each finger, the wrong one will start to respond for a second
7.69% My ability to tap each finger is better with my dominant hand than
with my other hnad
23.08% My ability to tap each finger is better on my nondystonic hand
than on my dystonic hand
3.85% unsure
19.23% not relevant ( 11A-2)
-If you make a fist with each hand then stretch the fingers out fully, and do this open and close motion as fast as you can, describe your experience
54.17% I can do this equally easily with either hand
16.67% I can do this equally fast with either hand
12.50% I can do this faster with my dominant hand
29.17% I can do this faster with my nondystonic hand
0% unsure
4.17% not applicable (11A – 6)
-If you stretch out and then separate all five fingers and then put them together again and separate and put them together, is there a jerky motion or delay as they move?
56.00% I can move them apart easily on either hand
32.00% The fingers respond smoothly
40.00% The fingers respond but some with tiny jerks or split second delays
4.00% The fingers on my dominant hand move apart more responsively
and wider apart than on my nondominant hand
0% The fingers of my dystonic hand move apart more responsively and
wider apart than on my nondystonia hand
4.00% unsure
8.00% not relevant (11A- 5)
-Can you catch a ball that is thrown to you?
56.00% Yes I can do it as easily as ever
20.00% Yes but it is more difficult than before dystonia
4.00% No, it is often not possible for me to catch it
16.00% unsure
4.00% not relevant ( 11A – 4)
-These questions ask about movement and effect on other body parts
0% My fingers freeze briefly for some motions
0% My hand freezes briefly for some motions
0% My arms freezes up for some motions
33.33% As I type, my shoulder, arm or back seem to tense up too
0% When I hold something in one hand, the other hand jerks
0% When I move the dystonic hand, the other hand jiggles or parallels the move
66.67% not applicable ( 31-4)
(low number of respondents to this question)
6. symptom progression
-These questions ask about if the dystonia progressed
33.33% My dystonia was only ever in the fingers
6.67% My dystonia was only ever in the hand
0% My dystonia was only ever in the wrist
26.67% The dystonia was in several parts from the start -eg. fingers and
wrist, fingers and hand, hand and forearm
20.00% The dystonia moved up my arm, from fingers to wrist or arm
6.67% The dystonia moved down my arm from arm to hand to fingers
13.33% The dystonia started in one hand and moved to the other hand
0% not sure
13.33% not relevant ( 11B – 1)
-progression of symptoms
33.33% The dystonia started in one place- finger, hand, wrist, arm- and stayed
there
33.33% The dystonia started in one place and also moved to another place
on the same side of my body
0% The dystonia started in one place and left there and moved to another place
on the same side of my body
33.33% The dystonia moved from one place to another on the other side of
my body
0% The dystonia stated in my shoulder or arm and moved down to hand or fingers
33.33% The dystonia started in my fingers or hand and moved up to the arm
and shoulders
33.33% not applicable (31-15)
(low number of respondents to this question)
7. pain
48.00% My dystonic hand aches
24.00% My dystonic hand is painful at rest
0% My dystonic hand is painful only when I move
28.00% My dystonic hand is only painful when I do certain motions
16.00% I have sharp shooting pain sometimes in my hand or fingers
8.00% I have no pain with hand dystonia
20.00% My problem seems to be coordination not pain
0% unsure
16.00% not applicable( 11A- 23)
8. voluntary or involuntary – curl, stretch, twist, writhe, bend, clench
– Do fingers four and five bend involuntarily?
8.00% Yes nearly always
32.00% Yes sometimes
60.00% No ( 11A- 7)
-Do any fingers start to curl on their own when doing a certain task?
48.00% Yes nearly always for that task
20.00% Yes but only sometimes for that task
28.00% No
4.00% not sure (11A – 8)
-Do any fingers extend on their own when doing a certain task?
25.00% Yes nearly always for that task
8.33% Yes but only sometimes for that task
58.33% No
8.33% not sure (11A- 9)
-These questions ask about involuntary stretching of fingers
12.50% One of my fingers is often stuck straight out
29.17% One of my fingers stretches straight out involuntarily when
I try to do some activities
16.67% One of my fingers stretches straight out involuntarily when I
try to play my favorite musical instrument or sport
33.33% My fingers do not involuntarily stretch out or stick straight out
12.50% not sure
16.67% not relevant (11A- 22)
-Does your whole hand curl when you start to do one particular task?
39.13% Yes very often for that task
13.04% Yes but only sometimes for that task
43.48% No
0% not sure
4.35% not relevant ( 11A – 13)
-Do your wrist and forearm move involuntarily?
11.54% Yes often
23.08% Yes sometimes
57.69% No
3.85% not sure
3.85% not relevant ( 11A -12)
-Do muscle contractions in your hand cause twisting?
20.83% Yes frequently
25.00% Yes but only sometimes
45.83% No
4.17% not sure
4.17% not relevant ( 11A -11)
-Do you have involuntary writhing or wringing of the hands where they move
a lot on their own?
16.00% Yes often
20.00% Yes but only rarely
56.00% No
8.00% not applicable ( 11A – 10)
-These questions ask about involuntary tightness or clenching of the hand.
46.15% My hand often cramps
30.77% My hand often clenches on its own
3.85% My hand is bent all the time
65.38% I have tightness in my hand doing an action that used to be easy to do
3.85% My hand cramps only when I play my favorite musical instrument
11.54% My hand clenches so tight it is hard to let go of an object
19.23% My hand never involuntarily cramps, clenches or forms a fist
3.85% not sure
11.54% not relevant ( 11A- 210
9. tremor, spasms
-tremor or shaking
7.69% I have tremor in only a finger or two
15.38% I have tremor in one hand
26.92% I have tremor in both hands
34.62% My tremor is gentle and mild
7.69% My tremor is visible shaking
11.54% My tremor is constant
30.77% My tremor is only occasional
0% My hand shakes consistently in one direction only
30.77% I do not have tremor or shaking
0% not sure
3.85% not relevant (11A- 19)
10. sensation, numbness
-Finger sensation
4.00% On my dystonic side I have trouble feeling if something is smooth or rough
4.00% On my dystonia side I have trouble feeling if something is hot or cold
4.00% On my dystonic side I have trouble sensing the position of tiny items
like bits of rice or pebbles
28.00% On my dystonic side I sometimes feel numbness
48.00% My ability to sense things with my fingers is normal
4.00% unsure
24.00% not relevant (11A- 20)
-These questions ask about sensation and pain
33.33% The sensation seems normal in my fingers and hand
33.33% I have numbness in my finger or fingers
0% I have numbness in my wrist
0% I have numbness in my hand
0% I have numbness in my arm
0%My affected finger, hand or arm feels heavy
33.33% My affected finger, hand or arm feels weak
0% I have pain at my fingertips
33.33% not applicable ( 31-1)
(low number of respondents to this question)
11. daily – self care
-self care
8.00% It is hard for me to hold and use a toothbrush
20.00% It is hard for me to floss my teeth
0% It is hard for me to comb my hair
0% It is hard for me to wash my face
0% It is hard for me to apply skin cream
32.00% It is hard for me to clip my nails
8.00% It is hard for me to shampoo my hair
0% It is hard for me to open my clamped hand to clean it
8.00% It is hard for to shave my face/legs
44.00% I have no problem doing any of the above activities
0% not sure
16.00% not applicable (11A- 25)
12. daily- eating
-grip and hand motion
71.43% I can easily hold a cup by the handle
66.67% I can easily hold a drinking glass
42.86% I can easily open a pill bottle or unscrew a jar
61.90% I can easily use a can opener
42.86% I drop things more often since dystonia
14.29% I have trouble holding a pill and getting it to my mouth (23-13)
13. daily- agility buttons, screwdriver
-daily activity
30.77% I have trouble picking up coins with my fingers
26.92% I have trouble holding a cup in my hand
26.92% I have trouble using a knife and fork
3.85% I have trouble shaking hands with someone
26.92% It is uncomfortable for me to hold someone’s hand
23.08% It is hard for me to use a screwdriver
38.46% It is hard for me to press keys on a smartphone or at a bank machine
34.62% It is hard for me to unscrew a bottle cap
50.00% It is hard for me to loosen a jar lid
11.54% I have no problems with any of the above activities
0% not sure
3.85% not applicable ( 11A-24)
-effect on daily life
66.67% It is hard for me to open a sealed plastic bag
33.33% If I push down on the top of a water bottle, it is hard for me to
lift up the button again
33.33% It is hard for me to press buttons on phones or at a self-serve kiosque
0% It is hard for me to push an elevator button
33.33% It is hard for me to push the button on an aerosol or spray paint can
33.33% I can still push buttons easily
0% I can still open bags easily (31-5)
(low number of respondents to this question)
14. daily- handwriting
-handwriting
72.00% My handwriting has become less legible
8.00% My handwriting has become smaller
24.00% My handwriting has become larger
44.00% It is hard for me to form letters as I write
32.00% It is hard for me to draw a spiral
36.00% It is hard for me to draw a steady straight line
24.00% My handwriting looks shaky on the page
44.00% My handwriting starts off all right but deteriorates after a few lines
28.00% It is hard for me to fill in or check circles on a test form
16.00% My handwriting on the page looks normal
4.00% not sure
4.00% not relevant (11A-27)
-ease of handwriting
47.83% It is hard for me to grasp a pen
56.52% I hold a pen in a firmer or more exaggerated way since dystonia
56.52% When I write, some of my fingers clench up involuntarily
13.04% When I write my elbow sometimes lifts up involuntarily
17.39% When I write, my hand sometimes twists so much the pen lifts
off the paper
30.43% When I write a finger sometimes extends involuntarily and makes the
pen fall out of my hand
0% When I write with my dominant hand the opposite shoulder starts to move
34.78% My hand shakes a little when I write
21.74% My hand shakes a lot when I write
13.04% My handwriting grip is normal and my motions are normal
4.35% not sure
4.35% not applicable (11A- 26)
15. daily – computer, technology
-ability to use a computer keyboard
62.50% It is easier for me to type on a keyboard than to do handwriting
20.83% It is hard for me to press some keys
20.83% It is hard for me to coordinate motion to type
8.33% It is hard for me to align my wrist and arm to type
4.17% When typing my elbow sometimes rises on its own
41.67% I can use a keyboard easily and normally
4.17% not sure (11A-28)
-using tech devices
0% I have no problems operating tech devices
33.33% It is hard to press buttons on the telephone
33.33% I have trouble operating a computer mouse
0% It is hard to press down keys on a keyboard
0% It is hard to press “Enter’ on the computer
0% It is hard for me to fill out computer based forms
66.67% Because of hand jerks I accidentally hit extra keys
33.33% not applicable ( 31-8)
(low number of respondents to this question)
16. daily- social
-social interaction
0% It is hard for me to shake hands because of odd finger positions
0% It is hard for me to shake hands because of grip problems
66.67% I have no trouble shaking hands
0% I have trouble waving to get attention
0%I have trouble waving hello or good-bye
0% It is hard for me to eat in public because my grip on the utensils
or cup is not secure
33.33% not applicable ( 31-7)
(low number of respondents to this question)
17. daily- music
-These questions ask about playing music and your dystonia
13.64% I only have dystonia when I play my musical instrument
9.09% Only one of my hand has dystonia and it is the one I use most
when playing music
9.09% My dystonia happens most when I play fast scale passages
0% When playing my fingers sometimes bend so much the skin cracks
under the nail or the fingernails leave a mark
13.64% I do not have problems playing a musical instrumebnt
9.09% unsure
63.64% not relevant (11A- 29)
-Were you a highly competent musician before you got dystonia?
33.33% Yes
33.33% No
33.33% not relevant ( 11B- 4)
-Did your musical performance deteriorate the more you practised?
33.33% Yes
6.67% No
6.67% not sure
53.33% not relevant ( 11B – 6)
-playing piano, accordion, organ or harpsichord
0% My fingers cramp but only when I play
0% My hand cramps but only when I play
4.35% I have dystonia mostly in my right hand
0% I have trouble making fingers cross over each other as I play
0% The problem is mostly with my 4th finger and baby finger
4.35% I have a lot of trouble playing ascending arpeggios
4.35% My right hand dystonia moved eventually to my right upper arm also
8.70% I can play with normal movement
4.35% not sure
86.96% not relevant ( 11A- 32)
-playing guitar, banjo, lute, nandolin or harp
9.52% It is mainly my left hand that is affected by dystonia
0% I have the most trouble sustaining tremolo evenly
0% My problem is mainly with how the 3rd finger bends
0% I have no problems with motion when playing this instrument
4.76% not sure
85.71% not relevant (11A- 31)
-These questions ask about playing a woodwind instrument
0% My problem is mainly with extension of my 3rd finger
0% My problem is with fingers bending involuntarily
0% As I play my hand rises involuntarily off the instrument
0% My hand motions are normal as I play
13.64% not sure
86.36% not relevant (11A- 30)
-These questions ask about how you have adjusted playing a musical instrument.
66.67% I do not play a musical instrument
33.33% The dystonia has not affected my playing
0% It helps if I play more slowly
0% It helps if I play more quickly
0% Changing the speed does not change the dystonia
0% I have tried refingering some musical pieces
0% I have shifted playing to use the other hand
0% I have changed to a different musical instrument
0% It helps if I think of the piece as a whole and don’t concentrate
on difficult passages (31-11)
(low number of respondents for this question)
18. daily- read, write
-These questions ask about reading and writing
33.33% It is hard for me to sign my name
100.00% My hand tenses up when I try to write several sentences
0% My hand curls as I try to draw a straight line
66.67% It is hard for me to fill out forms by hand
66.67% It is hard for me to fill out disability forms by hand
0% I have no problems writing or handling a pen
33.33% I have no problems holding a book and turning its pages with one hand
0% I have to use two hands to turn the pages of a book ( 31-6)
(low number of respondents to this question)
19. education , job
-These questions ask about past career and dystonia
33.33% I used my hands very precisely for my career and was very skilled
0% I used my hand very precisely for my career and did it intensely
0% I am a pistol shooter
0% I am a bagpipes player
0% I am a ping pong player
100.00% not applicable ( 31-9)
(low number of respondents to this question)
20. coping
-ways you have tried to cope with the dystonia
0% I have tried writing by looking in a mirror as I write
21.43% I have tried sensory stimulation of my fingertips
35.71% I have done special exercises for my fingers
35.71% I have done special exercises for my hands or wrists
0% I tried to increase finger sensitivity by carrying coins in my pockets
and moving them around once in a while
0% I tried to increase finger sensitivity by feeling embossed letters
or textured cloth
7.14% I tried to increase finger sensitivity by learning to read Braille
57.14% not relevant (11B- 9)
-These questions ask about the effect of making changes for the dystonia
0% When I switched hand to write with, the fingers of the original hand
still slowly bend and stretch as I write
30.77% Even if I splinted a finger to not bend it, I still feel a pressure for it to
bend
15.38% Even if I put a brace on my wrist or arm to keep them from twisting,
I still feel a pressure for them to twist
7.69% not sure
53.85% not relevant (11B-10)
-adjustments you have made because of dystonia
64.29% I take longer and go more slowly when I handwrite
42.86% I have changed equipment and use a different pen or fatter pencil
when I write
14.29% I have switched hands when I write
7.14% I have switched hands to play a musical instrument
28.57% I have refingered musical passages to still be able to play them
28.57% I have selected musical passages that do not require much from my
dystonic hand
7.14% I have switched hands to brush my teeth with
14.29% I have switched hands to comb my hair with
21.43% I have switched hands to eat with
0% I have not had to make any of the above adjustments due to dystonia
0% not sure
7.14% not applicable ( 11B -2)
-These questions ask about things you have done to cope with dystonia
66.67% As I write I adjust my hand position a lot
0% It helps if I try to write with a closed fist
33.33% I have tried writing with the other hand
0% It is easier to write if I untense between each movement
66.67% I have adjusted my keyboard, wrist rest or mouse because of dystonia
33.33% It is easier to type if I prepare, touch, float over the key, then wait after
each motion
0% It helps to immerse my hand in cold water first, for a few minutes
0% My dystonia is less if I hunch my shoulders (31-10)
(low number of respondents for this question)
-If you switched hands to write, did you later get dystonia in the other hand?
13.33% Yes
6.67% No
0% unsure
80.00% not relevant (11B – 3)
21. sensory tricks
-These questions ask about situations where the dystonia is suddenly less
6.67% The dystonia affecting my handwriting is less if I write upside down
6.67% The dystonia is less if I write with chalk on a chalkboard
26.67% The dystonia is bad when I try to make tiny detailed marks but
is reduced if I do larger motions like swirls
13.33% The dystonia is less if I write shorthand with its more fluid strokes
20.00% Despite handwriting dystonia, I can play the piano easily
20.00% Despite handwriting dystonia, I can type easily
0% Despite having dystonia when I type, I can handwrite easily
20.00% When I dig around in the garden, the dystonia is less
20.00% The dystonia is reduced when I use scissors
46.67% The dystonia does not affect my ability to do jigsaw puzzles
26.67% The dystonia does not affect my ability to grip a baseball bat or golf club
33.33% I have not found any sitautions where the dystonia is suddenly less
6.67% not sure (11B-7)
-If a finger involuntarily bends, do nearby fingers compensate by stretching?
11.54% Yes, often
23.08% Yes, sometimes
42.31% No
3.85% not sure
19.23% not relevant ( 11A – 16)
-If you move your hand that does not have dystonia, does the hand with dystonia also move?
0% Yes often
16.00% Yes sometimes
44.00% No
8.00% not sure
32.00% not relevant ( 11A- 17)
-Climbing vertical boards, does lifting one hand automatically make the other hand lift?
0% Yes often
0% Yes, sometimes
19.23% No, I have tried this and that is not my experience
73.08% I have never tried this
7.69% unsure (11A-18)
-Does having something vibrate next to the fingers affect the dystonia?
0% Yes, it makes it worse
0% Yes, it reduces the dystonia
3.85% No it has no effect on the dystonia
84.62% not sure
11.54% not relevant (11A – 14)
-situations where the dystonia seems less
0% It helps if I touch my nondystonic hand to my dystonic hand
0% The dystonia is less if I swing my arms at my side
0% The dystonia is less when I garden
33.33% The dystonia is less when I paint
0% The dystonia is less when I golf long shorts not short putts
66.67% I have not found situations when the dystonia is less ( 31-14)
(low number of respondents to this question)
22. treatments and devices
-things you have tried to do to reduce the dystonia
35.71% I have tried putting a glove or sock on my dystonic hand
14.29% I have tried taping a stick to my finger to keep it from bending
21.43% I have tried restraining some other fingers to make my dystonic
finger work harder
35.71% I have tried a brace on my wrist
7.14% I have tried a brace on my arm
21.43% My efforts above helped
28.57% My efforts above did not help
14.29% My efforts above caused me some new problems
7.14% not sure
28.57% not applicable ( 11B – 8)
-These questions ask about devices you have tried to help with dystonia
0% I have tried a splint for my fingers
0% I have tried attaching a coin or other object to the musical
instrument to help me press it
33.33% I have tried a wrist brace
0% I have tried an arm brace
0% The devices I have tried have helped
33.33% The devices I have tried have not made any difference
0% The devices I have tried have created new problems
66.67% not applicable ( 31-12)
(low number of respondents to this question)
23. medical treatment
-medical treatment
9.09% I have had cortisone injections for pain
0% I have had botulinum toxin injections
9.09% I regularly get botulinum toxin injections
27.27% I have been prescribed pills for pain
0% not sure
54.55% not relevant (11B- 12)
-These questions ask about surgeries you had before or since dystonia
0% I had carpal tunnel surgery before diagnosis of dystonia
0% I had carpal tunnel surgery since diagnosis of dystonia
0% I have had other surgery for my dystonia
100% I have not had surgery for the dystonia ( 31-13)
(low number of respondents to this question)
J. Analysis
sampling
The questions in this study were framed based on clinical studies, patient anecdotal comments and autobiographies of people with hand and finger dystonia. It is apparent that not all who filled out the surveys were in the categories. Few musicians did the surveys and very few athletes. These are serious gaps because dystonia is known to affect both of those groups significantly.
The nature of dystonia of the hand may itself preclude easy answering of questions, if a survey requires respondents to use computer keyboards, pen or pencil. Ideally a survey of those with hand dystonia might optionally be done orally.
location of the dystonia
67.86% reported the dystonia affects several fingers and only 3.57% said it
was only in one finger
39.29% said if affects the wrist
32.14% said it affects the lower arm while 17.86% reported it in the upper arm
25.00% said it affects part of both hands and 10.71% report that it in part of both arms
These numbers suggest that the dystonia affects more often the hands and lower arm than the upper arm. It is not clear is this is because there are many more muscles there and movement is more precise there or if overuse tends to happen more there, were overuse a factor to study.
Respondents report that this dystonia commonly affects more than one place. This is a concern to most patients who develop it and wonder if it will spread. The nature of the spread of dystonia has been examined in the surveys about eye, mouth, jaw, neck dystonia. It has been studied in some clinical research for leg and trunk dystonia also. Patterns of whether it moves to adjacent or non adjacent parts, whether it moves up or down the body closer to or farther from the core, do not seem consistent but may be useful to study.
In this study
32.1% reported the location is the same daily while 0% said it changes every few days
14.29% said the parts of body affected are beside each other and 3.57% report they are not beside each other.
symptom progression
6.67% report that the dystonia was only ever in the hand and 0% that it was only
ever in the wrist
33.33% reported that the dystonia was only ever in the fingers
20.00%- 33.33% reported that it moved from the fingers up, to the wrist, arm or
shoulders
0% – 6.67% reported that it moved down from the shoulder or arm to the
hand or fingers
13.33% – 33.33% reported that the dystonia moved to the other side of the body
Patterns of the spread of dystonia may reveal more about whether the dystonia is a phenomenon of physical spread like a virus moving to places nearby, or if it is a cell replication error carried through the blood to new locations as in metastasizing cancer. or whether it is a spread of message flaw within the brain. If the message from the brain is the key factor, one might look at whether the control areas of the brain for those areas are themselves adjacent in the brain.
An anomaly of dystonia seems to be that areas of spread are not necessarily adjacent in the muscle or adjacent in the brain control area. The dystonia message itself is reported as retained regardless of body part splinted or severed. Patients who had a muscle denervated to eliminate dystonia in that muscle often report that they a few years later developed dystonia in a nearby muscle.
When people with restless leg syndrome describe their condition they anecdotally report an unpleasant urge nearly impossible to suppress, to move their legs. They liken it to the urge to yawn. They also observe that moving the legs only reduces this urge a small amount and that the urge resurfaces quickly. This description is similar to the experience reported by those with dystonia who describe an irresistible urge to tilt or turn or twist, and the persistence of this urge. A separate examination of commonalities between dystonia and other medical conditions is made in a later chapter.
diagnosis
Task specific dystonia is difficult to test for in a clinical setting if the piano playing or golf swing cannot be displayed at the doctor’s office. However survey responses indicate that many doctors try to recreate what they can of this experience to test for it.
85.71% report the doctor examined their ability to do a range of motions
28.57% report the doctor examined them doing the task where they have dystonia
21,43% report that the doctor examined them while they were simulating doing the task
reaction time, delay, response to command
The surveys revealed that clapping hands it not usually affected but other motions are.
88.00% report they can clap hands easily and in time
bending fingers on command
57.69% report that when they try to bend a finger, adjacent fingers sometimes
also try to move
tapping fingers on command
26.92% report that when they try to tap each finger, sometimes two will respond at once
23.08% report that their ability to tap each finger is better on the nondystonic side
19.23% report that when they tap their fingers there is a delay for some fingers to respond
7.69% report that when they tap each finger, the wrong one will start to respond for a
second
making a fist on command
54.17% report they can make a fist equally easily with either hand
19.17% report they can make a fist faster with the nondystonic hand
stretching and separating fingers then drawing them together
56.00% report they can move the fingers apart easily on either hand
40.00% report that the fingers move apart with tiny jerks or split second delays
catching a ball that is thrown to them
56.00% report that they do this as easily as ever
20.00% report that it is more difficult to do this since dystonia
Anecdotally some patients have reported an oddity- that the dystonic hand responds per finger more individually without adjacent finger involvement than does the nondystonic hand. This pattern may be useful to study because it suggests that dystonia impairs ability of adjacent fingers to help with a response.
Handedness may be a factor and greater flexibility of the dominant hand may also be a factor before dystonia.It may be useful to study whether dystonia tends to affect the dominant or nondominant hand. Patients may also somewhat confuse terms dominant and dystonic given that the hand that has the more noticeable dystonia seems in a way to dominate the study of dystonia.
12.50% report they can make a fist faster with their dominant hand
7.69% report that their ability to tap each finger is better with the dominant hand
4.00% report that fingers move apart more responsibly and wider on the dominant hand
The surveys did not ask or clarify whether the dystonia was in the dominannt or nondominant hand. That may be a useful area to study. If dystonia tends to affect the dominant side, that may suggest that overuse is a factor. If the dystonia tends to affect the nondominant side, which does seem more common, that suggests that it attacks what is already weaker as if finding a vulnerability.
Catching a ball is a particularly interesting area of study. Some clinical research has suggested that bouncing a ball against a wall and retrieving it is still easy for someone with dystonia, nearly a sensory trick. The uniqueness of noticing rebound, timing the gesture, needing to also use the feet, grasping ability may be unique enough factors that make the motions not part of the dystonic pattern.
bending and curling, extending and stretching
The studies found that dystonia has two patterns and they seem to differ between patients.
For some the muscle is bending or curling on its own.
68.00% report that some fingers start to curl on their own nearly always or sometimes
when doing a certain task
42.17% report that their whole hand curls very often or only sometimes when
they start to do a particular task
40.00% report that fingers four and five bend involuntarily nearly always or sometimes
30.77% report that the hand often clenches on its own
11.54% report that the hand clenches so tight that it is hard to let go of an object
For others there is involuntarily sticking out, stretching and failure to bend
33.33% report that some fingers extend on their own sometimes or nearly always
when doing a certain task
29.17% report that one of their fingers straightens out involuntarily when they
try to do some activities
16.67% report a finger stretches straight out involuntarily when they try to play
a favorite musical instrument or sport
12.50% report that one of their fingers is often straight out
The phenomena of curling versus sticking straight out could be useful to study for what causes the difference, what is going technically and what types of other features of dystonia correlate with this presentation.
The phenomenon of curling in particular seems useful to study in terms of the nature of a muscle that is deprived of blood or oxygen in rigor mortis. In such a situation the body also tends to curl. One might wonder if there is some cell death in muscles that are curling.
A separate examination of orientations and dystonia, left right, up down, open closed, curled or straight is made in a later chapter.
other involuntary motions
34.62% report that their wrist and forearm often or sometimes move involuntarily
45.83% report that their hand twitches due to muscle contractions frequently or
sometimes
36.00% report that they have involuntary writhing or wringing of hands often or rarely
pain, cramps
48.00% report that their dystonic hand aches
46.15% report that their hand often cramps
28.00% report that the dystonic hand is only painful when they do certain motions
24.00% report that the dystonic hand is painful at rest
16.00% report they have sharp shooting pain sometimes in their hand or fingers
8.00% report they have no pain with hand dystonia
The variation in these responses is of interest.
tremor, spasms
Dystonia of the hand, similarly to that of the neck, seems to have separate features – position, pressure, muscle tightness, pain, tremor. Patients anecdotally report that these features are not always the same. For some tightness is the problem while for others it is position.
20.00% reported that their problem seemed to be coordination not pain
The experience of tremor and spasms also does not seem universal.
34.62% report the tremor is gentle and mild
30.77% report they have no tremor or shaking
30.77% report occasional tremor
11.54% report constant tremor
7.69% report visible shaking
The location of the tremor varies. The surveys did not ask whether the problem with tightness of muscle is in the same location as is tremor. Those may be useful questions to ask.
26.92% report tremor in both hands
15.38% report tremor in one hand
7.69% report tremor in only a finger or two
The nature of tremor may also bear study. Patients may differ in their understanding of terms like spasms, shaking, tremor, jerks. It may be useful to clarify their meaning in any follow up survey. It would also be useful to ask about types of tremor, whether it is experienced at rest, before a motion, during a motion or in relief after a motion. Those factors were not studied. The survey on pain examines some aspects of the discussion however and may be useful to compare.
effect on daily life
Respondents indicated that dystonia of the hand has significant impact on daily life.
66.67% find it hard to open a sealed plastic bag
50.00% report it is hard to loosen a jar lid
42.86% report they drop things more often since dystonia
38.46% find it hard to press keys on a smartphone or at a bank machine
34.62% find it hard to unscrew a bottle cap
33.33% find it hard to lift up a water bottle button once it is pressed down
or to press buttons at a self-serve kiosque or to push a button on an aerosol can
32.00% report it is hard to clip their nails
30.77% have trouble picking up coins with their fingers
26.92% find it difficult to hold a cup in the hand, use a knife and fork or to hold
someone’s hand
23.08% find it hard to use a screwdriver
20.00% report it is hard to floss their teeth
14.29% report they have trouble holding a pill and getting it to the mouth
8.00% report it is hard to hold and use a toothbrush or to shave
handwriting
In our society being able to say your name and write it are vital for many interactions but dystonia seems to impact them. Those with vocal cord dystonia often report problems even saying their name and those with hand dystonia problems writing it.
72.00% report that their handwriting has become less legible
66.67% report that it is hard to fill out forms by hand
33.33% report that it is hard to sign their name
24.00% report that their handwriting looks shaky on the page
nature of the difficulty
There may be patterns of which motions are still easy and which ones are difficult. The resulting handwriting however may not just be due to dystonia but also to the person’s attempt to compensate for it. In a similar way, those with neck dystonia report that their motion as they walk down a street is combination of what the dystonia is pressuring them to do and their movement to try to overcome it.
56.52% report that when they write some fingers clench up involuntarily
47.83% report that it is hard to grasp a pen
44.00% report that it is hard to form letters
34.78% report that their hand shakes a little and 21.74% that it shakes a lot
when they write
36.00% report that it is hard to draw a steady straight line
32.00% report that it is hard to draw a spiral
30.43% report that when they write a finger extends involuntarily and makes
the pen fall out their hand
28.00% report that it is hard to fill in or check circles on a test form
26.67% report they have trouble making tiny detailed marks but can do larger
motions like swirls more easily
17.39% report that when they write the hand sometimes twists so much the
pen lifts off the paper
13.33% say the dystonia is less if they write shorthand with its more fluid strokes
13.04% report that when they write their elbow sometimes lifts up involuntarily
compensation
66.67% report that as they write they change hand position a lot
64.29% report that they take longer and go more slowly when they handwrite
56.52% report they hold a pen in a firmer or more exaggerated way since dystonia
44.00% report that their handwriting starts off all right but deteriorates after a few lines
42.86% have changed equipment and use a different pen or fatter pencil
33.33% report they have tried writing with the other hand
24.00% report that their handwriting has become larger and 8.00% that it has become smaller
14.29% have switched hands when they write
computer
Impact on handwriting may be lessened if computers are used. though some respondents report challenges using a computer.
66.67% report they have adjusted the keyboard, wrist rest or mouse because of dystonia
66.67% say that because of hand jerks they accidentally hit extra keys
62.50% report that it is easier to type on a keyboard than to do handwriting
33.33% say they have trouble operating a computer mouse
33.33% report that it is easier to type if they prepare, touch, float over the key and then
wait after each motion
20.83% report that it is hard to press some keys and 20.83% report that it is hard to coordinate motion to type
8.33% say it is hard for them to align their wrist and arm to type
4.17% report that when typing their elbow sometimes rises on its own
Patients report several strategies to cope/ One is adjusting position of the body, the hand or the equipment.
Another seems to be rhythm. Those who slow down or pause between computer key strikes make their movements more intentional The idea of coping with dystonia by a more extreme or exaggerated strategy is also reported by with those with cervical dystonia who say that trying to lift the head they may open their mouth wide, a gaping that is not normally required for head raising.
This phenomenon is also reported by those with mouth or jaw dystonia and problems swallowing. Some try to cope by slowing down and by making all mouth motions more dramatic – chewing with mouth open, spitting up to trigger the muscles to recall how to swallow.
coping
In addition to adjustments to handwriting and computer use, many respondents have made other adjustments to work around the dystonia.
21.43% have switched hands to eat with
14.29% have switched hands to comb their hair
7.14% have switched hands to brush their teet
Musicians have made adjustments also though numbers of respondents for the questions on music was small.
28.57% have refingered musical passages
28.57% have selected musical passage that do not require much from the dystonic hand
7.14% have switched hands to play the musical instrument
These results could be combined with those of musicians with jaw and mouth dystonia who also report having tried many strategies to adapt to the dystonia and still play music.
sensory tricks
The high incidence of sensory tricks for those with hand dystonia suggests that the hand muscles and the brain connections to them are very task specific and that only slight changes of requirement of task do not trigger the dystonia the same way.
Using scissors, doing puzzles, gardening require precise hand use but not quite the same as for picking up a coin or combing the hair. It may seem that the hand is either good at or not good at all hand-related tasks but with the trick suddenly the hand still can be adept at some of them. The dystonic message seems very precise and task -specific and though the range of motions it now impairs may be broad, with the trick it is evident the range is not fully impaired.
46.67% report their ability to do jigsaw puzzles is not affected
33.33% report that the dystonia is less when they paint
0%- 20.00% report that when they dig around in the garden the dystonia is less
20.00% say they can still type easily or play the piano easily
20.00% say that the dystonia is less when they use scissors
6.67% say the dystonia affects their handwriting less if they write upside down
6.67% say the dystonia is less if they write with chalk on a chalkboard
A focused examination of sensory tricks was done in a separate survey.
involuntary assist
In the general population people can move each finger individually on command. However the 3rd and 4th fingers in particular seem hard to make function completely separately. One notices that effort to move one involves often a tiny motion from the other. People differ in ability to perfectly engage only one finger and pianists train for high levels of this. The ability to not move the fingers you wish to keep still has been called surround inhibition.
However movement of a nonintended finger may not fully be error. Functionally if a person has to do a task, having other fingers somewhat primed to also respond may be useful such as grasping or lifting or trying to turn a dial. The brain seems to also command fingers to work as a team, so surround inhibition is not always the command.
These phenomena however seem to shift with dystonia. Patients anecdotally report that the nondystonic hand acts as usual when they try to move each finger individually on command. They can do it but the other fingers also slightly move as if ready to assist. However the dystonic hand now acts differently. It is easier not harder to move each finger alone. The other fingers seem less responsive, not as ready to assist. What this suggests is that dystonia may be a deficit in the command to work as a team, and leaves the dystonic digit more on its own, without assist. That suggests that with dystonia there is not a deficit of surround inhibition, but an excess of it. The other fingers are not ready enough to assist. These phenomena may be useful to study.
34.62% report that if a finger involuntarily bends, nearby fingers compensate by
stretching often or sometimes
16.00% report that if they move the hand that does not have dystonia, the hand
with dystonia also moves sometimes
devices tried
Patients report many ways they have tried to overcome, work around, adapt to the dystonia or compensate for it. A physical device may be tried, to straighten a bent finger, to prevent motion of a finger that is overactive, to give a weaker finger more strength or to force a dystonic finger to work harder by preventing assistance from others.
35.71% have tried a brace on the wrist
35.71% have tried putting a glove or sock on the dystonic hand
21.43% have tried restraining other fingers to make the dystonic finger work harder
14.29% have tried taping a stick to the finger to keep it from bending
7.14% have tried a brace on the arm
These efforts have had mixed results
28.57% report that they efforts did not help
21.43% report that the efforts did help
14.29% report that the efforst caused them some new problems
The nature of dystonia as not just a physical problem to be overcome with exercise seems clear in many of these surveys. Though an observer may feel that a person just needs to straighten that curled finger or straighten the bent neck, not only does straightening it by force not usually lead it to being straighter when the pressure is released, but the problem seems to be a persistence of the intense urge or pressure to tilt. It is as if the problem is the message itself, according to some anecdotal reports.
These frustrations have been noted in the surveys of other types of dystonia. Some report that exercises for the mouth did not end up correcting embouchure problems Some report that braces did not always help and sometimes made worse neck dystonia if the patient felt that a brace weakened the muscles they already had to try to overcome the problem naturally.
Lived Experience With Dystonia 