35. Describing Dystonia

 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


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


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


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









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


            (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.