Describing Dystonia
A Context
Since dystonia is not well known by the public, historically not easily identified by doctors and often visible or audible as a problem, patients vary widely in how they describe it. How they tell others about it depends on their perception of the willingness of the listener to understand.
In social media postings, autobiographies and candid talks with fellow patients, there is often a tone of candid bluntness and surprising humor, than what seem to be expressed to strangers or possibly even to doctors.
B. What seems useful to study further
Dystonia is a difficult condition to describe technically and many try to compare it to known experiences other have and that they also had, before dystonia. The metaphors can be graphic, poetic and reassuring for other patients to hear, that their own experience is validated. The comparisons to other known experiences may also shed a light on the technical nature of dystonia, how it works in the body. For this reason the surveys asked about how people describe it.
C Comments from clinical studies and researchers
She had a dromedary walk
She used the water carrier sensory trick
She used the turban trick
He went into the praying mantis pose to relieve symptoms
D. Comments from patient experience
general- tilt, balance
Dystonia is having a pinball in your body bounce back and forth between barricades
Dystonia is like having one foot on the gas and one on the brakes all the time
I walk like a wonky donkey
I walk like the Tin Man
It feels like I am walking on a water bed
It is like trying to run a marathon with broken legs
I stand like the Tower of Pisa
I have a bendy straw neck
pain
It feels like a railroad is being hammered into my neck
It feels like a toothache in my neck
It feels like I have a charley horse that does not go away
pressure
My head feels like a ten pin bowling ball
I feel like I have been hit by a train
If feels like the meat from the muscles around my traps is about to fall apart.
It feels like there is a G force pushing my neck sideways
Before a thunderstorm my symptoms are worse. I’m a living barometer
twisting
It feels like a game is being played on me- twisting me till I beg for mercy
4t feels like a key is stuck in the back of my head and slowly being wound up
My body feels like a wrung out towel
lack of control
I feel like a puppet and someone else is controlling the strings
My arms are spawning
tingles, clicks
My muscles click like bubble wrap
My muscles sound like popping corn
My tingles feel like walking on ice
My tingling feels like bacon sizzling
When my muscles click, it’s like I hear gunshots
tremors, twitches, spasms
It’s like a twitch that won’t go away
vocal cords
My vocal cords are curling in like a baby’s palm curls around your fingers
Dystonia is like an eye twitch in the vocal cords
I sound like a cartoon character on helium
I sound like the Godfather
I sound like a frog
I tell people I have muscles spasms in my vocal cords
I tell people it’s like Parkinson’s of the vocal cords. The nerves fire the muscles wrong
E How to ask
Source of question ideas
– patient reports. clinical studies
F. Question Categories
general
pressure
pain
appearance
humor
spasms
balance
clicks,
social effects
G. Questions asked -survey number, question number
surveys 18, 40
H. Results
describing dystonia
18 34 describing 7 26 83 3
40 5 describing 6 6 80 1
max no. respondents 34
total questions 32
likely type of dystonia all
percent of all respondents doing survey 34 of 508 or 6.7%
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. general
Do you describe it that your body seems to be fighting against itself?
81.25% Yes
18.75% No (18-5)
Does dystonia seem like a puzzle with many pieces?
93.75% Yes
6.25% No (18-19)
Does dystonia seem like your own form of dystopia?
48.15% Yes, it is its own separate reality some days
51.85% No, that image does not amuse me (18-23)
How do you think of your dystonia?
0% My body feels like it is on fire
20.00% I am on a medical roller coaster
80.00% My body is struggling
0% My body is in ruins
20.00% My body is one hot mess
40.00% This condition is a brutal nightmare
80.00% I would not wish this condition on anyone
60.00% My body is heroically fighting a very strong challenge (40-1)
(low number of respondents to this question)
-How do you describe dystonia to those who do not have it?
0% My body is at war
60.00% Dystonia is like Parkinson’s but different
0% I feel like an old rusty typewriter with keys that jam
0% My muscles feel hot like a fever with no fever
40.00% There is a constant very strong push against me
20.00% It feels like part of me is being crushed
0% It feels like being hit by a train
0% It is like walking on a waterbed
0% My eyes are fine but I can’t open them
20.00% My voice is not cooperating with me
20.00% none of the above ( 40-3)
(low number of respondents to this question)
2. pressure, resistance
Is the force on you to keep the muscle tight so intense it seems linked to a survival instinct, like the need for air or water?
44.83% Yes
55.17% No (18-10)
Does it feel like there’s a G force pressure on you or gravity but pushing you sideways?
40.63% Yes
59.38% No (18-1)
Does it feel like someone is holding a part of your body stuck in mud?
32.26% Yes
67.74% No (18-6)
Does it feel like a vice is pushing your head into a position you don’t want?
52.94% Yes
20.59% No
26.47% not applicable (18-7)
Does it feel like someone is pushing you against a wall?
20.00% Yes
80.00% No (18-8)
3, pain
If you use the wrong pillow does it feel like you fell from a 10 storey window?
34.48% Yes
65.52% No (18-22)
-Does it feel like a key was stuck in the back of your neck and slowly wound up?
34.38% Yes
65.63% No (18-2)
Does the dystonia feel like having a charley horse that does not go away?
56.67% Yes
43.33% No ( 18-13)
Is the twisting of your neck so violent you nearly rip at your hair to stop it?
25.81% Yes
48.39% No
25.81% not applicable (18-16)
How do you describe your current condition to others who have dystonia?
20.00% I speak of where my pain ‘lives’ where it is hanging out or acting
up today
40.00% I speak of pain in an understated way, like a significant pain
is a ‘pretty good pain’ , ‘quite a bit of pain”
60.00% I think of others with dystonia as the key group that will understand,
my buddies, my gang
80.00% It is reassuring to share my ups and downs with those who have
been there
60.00% It is helpful to share my questions with those who have more experience
0% I don’t know anyone else with this condition
0% I do not communicate much with anyone with this condition
20.00% Hearing from others with this condition makes me sadder some days
(40-2)
(low number of respondents to this question)
4. appearance
Do you sometimes dress up in striped socks so your foot angles at least look silly?
3.45% Yes that’s a cute idea
31.03% No. I don’t do that but it amuses me to hear it
10.34% No I don’t think that’s appropriate
55.17% not applicable (18-25)
5. spasms
Do the spasms feel like normal jerks as people fall asleep but they happen thousands of times a day?
40.63% Yes
37.50% No
21.88% I don’t have spasms ( 18-3)
Does it feel like you are in a cave trying to shore up a wall and your muscle is so tired it spasms from the effort?
36.67% Yes
40.00% No
23.33% not applicable (18-9)
6. tingles, electric, ‘fire’
Does your pain feel like uncooked peas sizzling in a hot pan?
13.33% Yes
86.67% No (18-12)
Does your leg feel like it is burning all the time?
10.00% Yes
90.00% No (18-15)
7. balance
Does your balance feel like you are walking on gravel or shards of glass?
25.81% Yes
74.19% No (18-4)
Does it sometimes feel as you walk like you are in the fun house at the midway, the one with the crooked floor?
53.33% Yes
26.67% No
20.00% not applicable (18-14)
Do you sometimes muse that it takes skill to fall up stairs and trip over nothing but you have those skills?
39.29% Yes, cute image and it seems sort of right
25.00% No. I don’t seem humor in that
35.71% not applicable (18-21)
Do you sometimes think of yourself affectionately as a wonky donkey?
29.63% Yes that image helps me
22.22% No, that image does not amuse me
48.15% No. that image does not apply to my situation (18-24)
8. clicks
Does it seem like your body cracks like a glow torch without the glow?
31.03% Yes
44.83% No
24.14% not applicable (18-11)
9. humor
Has anyone ever thought when you said cervical dystonia it was about your womb?
28.57% Yes
71.43% No (18-18)
Has anyone on hearing you had dystonia misunderstood the word?
100.00% Most people have never heard of it
3.45% People wonder if it is close to other things with dis like distemper
or other things with tone like hypertonia
24.14% People seem embarrassed when told what it is because they als
don’t know what dystonia is
41.38% I have met at least one person who had already heard of it (18-17)
Does it seem like you are now a pro at twisting games and body popping?
28.57% Yes, cute image
71.43% No. I don’t think of it that way (18-20)
Do you sometimes laugh at yourself dropping things or trying to shave as if you looked like a crime scene?
25.00% Yes, that image amuses me
25.00% No that image does not amuse me
50.00% That situation does not match my own (18-26)
These questions ask about how you might describe dystonia with humor.
20.00% I am not sick, just twisted
40.00% My body is experiencing technical difficulties
0% Some of my muscles are knot so cool
20.00% Some of my body parts are in a gated community and someone
keeps closing the door
0% Some days my muscles are fried
40.00% I have become, not by choice, a person of few words
0% Anything to easy to do that I could do it with my eyes closd,
apparently my body makes me do that way
40.00% none of the above ( 40-5)
(low number of respondents to this question)
10. whether disabled
How do you label dystonia?
80.00% I think of my dystonia as a medical condition
0% I think of my dystonia as a disease
60.00% I think of my dystonia as a disability
20.00% Dystonia is in my way but I don’t think of myself as disabled
0% I am relieved to get the special parking and helps that come with being
designated disabled
40.00% I am hurt to be thought of as disabled
20.00% Some forms of dystonia are disabilities but mine right now is not
0% I am enduring real problems financiall because of dystonia and
I deserve the designation of being disabled
20.00% I am enduring real challenges in daily life because of dystonia and dserve
the designation of being disabled (40-4)
(low number of respondents to this question)
J. Analysis
The use of metaphor to describe dystonia seems common to place this new experience into a frame of reference of past experience. The answers confirm that there is a range of experience – of pain, of pressure, of tremor and this is consistent with the results of other surveys, suggesting that dystonia itself is a number of related but not identical conditions
A problem with metaphor is that it assumes shared experience of the comparison event. Walking on a waterbed or falling from a 10 storey window may not be a common image in some communities. People also differ in their tendency to humorously overstate situations. These questions then may not be fully relevant as medical study unless combined with results of other surveys.
When people with dystonia speak with those who also have it, there seems to be an increased comfort, shortened forms and understood mutual jargon that may not be understood the same way outside that community. Just as people with diabetes talk about their sugars, those with any medical condition seem to over time also have their own jargon, speaking of meds, not medicine, scrips not prescriptions, and may refer to medical professionals as my pt, ot, dr, neuro.
Those with dystonia seem to have a particular use of terms such as getting my pokes
Results of these surveys suggest that the journey for those with dystonia can be very an emotional one, but that some of those emotions are also positive.
Lived Experience With Dystonia 