There are 22 surveys. Nearly all of the questions are yes-no questions. Eg. Have you found relief through massage, exercise, nearby vibrations?
There are a few questions that ask among a series of answers.
Eg. What parts of the body are affected by dystonia in your case? Check all that apply.
eyes shoulder
face arm
mouth hand, fingers
vocal cords leg, foot, toes
neck trunk
For some questions, it is possible to write in an answer.
Eg. Has dystonia interfered with doing your favorite sport or hobby?
Yes but I still do it.
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There is a range of topics, and people can select ones that interest them.
eg. about symptoms
Are you often in intense pain?
eg. about symptom progression
Does your dystonia seem less for the first hour of each day?
eg. about effect on daily life
Have you adjusted how you hold a book to read because of dystonia?
eg. about times when the dystonia seems less/ sensory tricks
Are there parts of your body that when you touch them the tremors suddenly stop?
eg. about specific body parts affected
eg. about ways you have learned to cope
Do you find that a hot bath or shower is a huge relief ?
eg. about medical access, tests, treatments
Is it hard to stay still during an X ray or other scan?
eg. about effects and side effects of treatments
Since the treatment are you sleeping longer?
eg. about alternative treatments tried
Have you tried Yoga?
eg. about moods and emotional supports
Do you feel people are staring at you?
eg. about how you describe dytonia to others
Do you tell others that your body is fighting against itself?
eg. about possible causes
Have you had a whiplash type injury?
eg. about some controversial issues
Researchers wonder if the muscle spindles are too sensitive and are sending back overactive messages.
Does it feel like your muscles need to be quieted, made less active?
eg. about your outlook
Do you still go to family gatherings?
Lived Experience With Dystonia 