Coping with dystonia - questionnaire

About your dystonia

Please note this is a confidential survey. No contact details will be collected and results will be presented as summaries without any individual information being displayed.

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* 1. What part(s) of the body does dystonia affect?

	Dystonia affects this part of the body	I receive botulinum toxin injections in this part of the body
Neck	Neck Dystonia affects this part of the body	Neck I receive botulinum toxin injections in this part of the body
Eye	Eye Dystonia affects this part of the body	Eye I receive botulinum toxin injections in this part of the body
Mouth / Tongue / Jaw	Mouth / Tongue / Jaw Dystonia affects this part of the body	Mouth / Tongue / Jaw I receive botulinum toxin injections in this part of the body
Voice	Voice Dystonia affects this part of the body	Voice I receive botulinum toxin injections in this part of the body
Hand / Arm	Hand / Arm Dystonia affects this part of the body	Hand / Arm I receive botulinum toxin injections in this part of the body
Abdomen / Trunk	Abdomen / Trunk Dystonia affects this part of the body	Abdomen / Trunk I receive botulinum toxin injections in this part of the body
Legs	Legs Dystonia affects this part of the body	Legs I receive botulinum toxin injections in this part of the body
Foot	Foot Dystonia affects this part of the body	Foot I receive botulinum toxin injections in this part of the body
Whole body	Whole body Dystonia affects this part of the body	Whole body I receive botulinum toxin injections in this part of the body
One side of the body	One side of the body Dystonia affects this part of the body	One side of the body I receive botulinum toxin injections in this part of the body

Other (please specify)

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* 2. Which type of dystonia is it?

Focal dystonia (affects 1 area of the body)

Multi focal or segmental dystonia (affects 2 - 3 areas of the body)

Generalised dystonia

Tremor

Myoclonus dystonia

Functional dystonia

Dopa responsive dystonia

Tardive (drug-induced) dystonia

Dystonia caused by accident, trauma, cerebral palsy or another condition

Paroxysmal dystonia

Hemidystonia

Hemifacial spasm

Other (please specify)

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* 3. How old were you (or the person you care for) on 1st January 2015?

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* 4. How old were you (or the person you care for) when symptoms of dystonia first appeared?

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* 5. What year was the dystonia diagnosed?

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* 6. Are you (or the person you care for) male or female?

Male

Female

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* 7. Do you (or the person you care for) currently live in the UK?

In United Kingdom

Outside United Kingdom

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* 8. Is treatment provided by NHS, private or both

NHS

Private healthcare provider in the UK

Both the above

Healthcare provider outside UK

Other (please specify)

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* 9. Symptoms caused by dystonia
Over the last 3 months, how severe were each of these symptoms at their worst?

	Not applicable	No symptoms	Mild symptoms	Moderate symptoms	Severe symptoms
Neck problems (head twisted, pulled to the side or forwards or backwards)	Neck problems (head twisted, pulled to the side or forwards or backwards) Not applicable	Neck problems (head twisted, pulled to the side or forwards or backwards) No symptoms	Neck problems (head twisted, pulled to the side or forwards or backwards) Mild symptoms	Neck problems (head twisted, pulled to the side or forwards or backwards) Moderate symptoms	Neck problems (head twisted, pulled to the side or forwards or backwards) Severe symptoms
Limbs twisted or contorted	Limbs twisted or contorted Not applicable	Limbs twisted or contorted No symptoms	Limbs twisted or contorted Mild symptoms	Limbs twisted or contorted Moderate symptoms	Limbs twisted or contorted Severe symptoms
Trunk twisted, contorted or out of alignment	Trunk twisted, contorted or out of alignment Not applicable	Trunk twisted, contorted or out of alignment No symptoms	Trunk twisted, contorted or out of alignment Mild symptoms	Trunk twisted, contorted or out of alignment Moderate symptoms	Trunk twisted, contorted or out of alignment Severe symptoms
Problems with speech	Problems with speech Not applicable	Problems with speech No symptoms	Problems with speech Mild symptoms	Problems with speech Moderate symptoms	Problems with speech Severe symptoms
Problems with chewing or swallowing	Problems with chewing or swallowing Not applicable	Problems with chewing or swallowing No symptoms	Problems with chewing or swallowing Mild symptoms	Problems with chewing or swallowing Moderate symptoms	Problems with chewing or swallowing Severe symptoms
Vision affected by eyelid closure	Vision affected by eyelid closure Not applicable	Vision affected by eyelid closure No symptoms	Vision affected by eyelid closure Mild symptoms	Vision affected by eyelid closure Moderate symptoms	Vision affected by eyelid closure Severe symptoms
Problems with using hand to write or use a computer	Problems with using hand to write or use a computer Not applicable	Problems with using hand to write or use a computer No symptoms	Problems with using hand to write or use a computer Mild symptoms	Problems with using hand to write or use a computer Moderate symptoms	Problems with using hand to write or use a computer Severe symptoms
Problems playing a musical instrument	Problems playing a musical instrument Not applicable	Problems playing a musical instrument No symptoms	Problems playing a musical instrument Mild symptoms	Problems playing a musical instrument Moderate symptoms	Problems playing a musical instrument Severe symptoms

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* 10. Other symptoms of dystonia
Over the last 3 months, how severe were each of these symptoms at their worst?

	Not applicable	No symptoms	Mild symptoms	Moderate symptoms	Severe symptoms
Difficulty with movement (walking, climbing steps etc)	Difficulty with movement (walking, climbing steps etc) Not applicable	Difficulty with movement (walking, climbing steps etc) No symptoms	Difficulty with movement (walking, climbing steps etc) Mild symptoms	Difficulty with movement (walking, climbing steps etc) Moderate symptoms	Difficulty with movement (walking, climbing steps etc) Severe symptoms
Problems when at rest (difficult or painful to stand, lie and/or sit)	Problems when at rest (difficult or painful to stand, lie and/or sit) Not applicable	Problems when at rest (difficult or painful to stand, lie and/or sit) No symptoms	Problems when at rest (difficult or painful to stand, lie and/or sit) Mild symptoms	Problems when at rest (difficult or painful to stand, lie and/or sit) Moderate symptoms	Problems when at rest (difficult or painful to stand, lie and/or sit) Severe symptoms
Problems with balance and/or falls	Problems with balance and/or falls Not applicable	Problems with balance and/or falls No symptoms	Problems with balance and/or falls Mild symptoms	Problems with balance and/or falls Moderate symptoms	Problems with balance and/or falls Severe symptoms
Pain	Pain Not applicable	Pain No symptoms	Pain Mild symptoms	Pain Moderate symptoms	Pain Severe symptoms
Problems with sleep (including falling asleep, night sleep frequently interrupted, not feeling refreshed etc)	Problems with sleep (including falling asleep, night sleep frequently interrupted, not feeling refreshed etc) Not applicable	Problems with sleep (including falling asleep, night sleep frequently interrupted, not feeling refreshed etc) No symptoms	Problems with sleep (including falling asleep, night sleep frequently interrupted, not feeling refreshed etc) Mild symptoms	Problems with sleep (including falling asleep, night sleep frequently interrupted, not feeling refreshed etc) Moderate symptoms	Problems with sleep (including falling asleep, night sleep frequently interrupted, not feeling refreshed etc) Severe symptoms
Tiredness or lack of energy affecting daytime activities	Tiredness or lack of energy affecting daytime activities Not applicable	Tiredness or lack of energy affecting daytime activities No symptoms	Tiredness or lack of energy affecting daytime activities Mild symptoms	Tiredness or lack of energy affecting daytime activities Moderate symptoms	Tiredness or lack of energy affecting daytime activities Severe symptoms
Feeling anxious, nervous or frightened	Feeling anxious, nervous or frightened Not applicable	Feeling anxious, nervous or frightened No symptoms	Feeling anxious, nervous or frightened Mild symptoms	Feeling anxious, nervous or frightened Moderate symptoms	Feeling anxious, nervous or frightened Severe symptoms
Feeling depressed or sad	Feeling depressed or sad Not applicable	Feeling depressed or sad No symptoms	Feeling depressed or sad Mild symptoms	Feeling depressed or sad Moderate symptoms	Feeling depressed or sad Severe symptoms
Problems eating and/or drinking (handling cup / cutlery, chewing, swallowing etc)	Problems eating and/or drinking (handling cup / cutlery, chewing, swallowing etc) Not applicable	Problems eating and/or drinking (handling cup / cutlery, chewing, swallowing etc) No symptoms	Problems eating and/or drinking (handling cup / cutlery, chewing, swallowing etc) Mild symptoms	Problems eating and/or drinking (handling cup / cutlery, chewing, swallowing etc) Moderate symptoms	Problems eating and/or drinking (handling cup / cutlery, chewing, swallowing etc) Severe symptoms
Social life affected	Social life affected Not applicable	Social life affected No symptoms	Social life affected Mild symptoms	Social life affected Moderate symptoms	Social life affected Severe symptoms
Lack of confidence leaving the house	Lack of confidence leaving the house Not applicable	Lack of confidence leaving the house No symptoms	Lack of confidence leaving the house Mild symptoms	Lack of confidence leaving the house Moderate symptoms	Lack of confidence leaving the house Severe symptoms
Problems with daily living tasks (cooking, cleaning, washing etc)	Problems with daily living tasks (cooking, cleaning, washing etc) Not applicable	Problems with daily living tasks (cooking, cleaning, washing etc) No symptoms	Problems with daily living tasks (cooking, cleaning, washing etc) Mild symptoms	Problems with daily living tasks (cooking, cleaning, washing etc) Moderate symptoms	Problems with daily living tasks (cooking, cleaning, washing etc) Severe symptoms
Problem driving	Problem driving Not applicable	Problem driving No symptoms	Problem driving Mild symptoms	Problem driving Moderate symptoms	Problem driving Severe symptoms
Problem watching TV and/or reading	Problem watching TV and/or reading Not applicable	Problem watching TV and/or reading No symptoms	Problem watching TV and/or reading Mild symptoms	Problem watching TV and/or reading Moderate symptoms	Problem watching TV and/or reading Severe symptoms
Problems accessing education / other social opportunities	Problems accessing education / other social opportunities Not applicable	Problems accessing education / other social opportunities No symptoms	Problems accessing education / other social opportunities Mild symptoms	Problems accessing education / other social opportunities Moderate symptoms	Problems accessing education / other social opportunities Severe symptoms

Other (please specify)

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* 11. Were you working when symptoms of dystonia appeared?

Yes

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* 12. If yes, then has your work changed since the dystonia started?

	No change	Change was not at all due to problems caused by dystonia	Change was partly due to problems caused by dystonia	Change was entirely due to problems caused by dystonia
There has been no change	There has been no change No change	There has been no change Change was not at all due to problems caused by dystonia	There has been no change Change was partly due to problems caused by dystonia	There has been no change Change was entirely due to problems caused by dystonia
I have given up work altogether	I have given up work altogether No change	I have given up work altogether Change was not at all due to problems caused by dystonia	I have given up work altogether Change was partly due to problems caused by dystonia	I have given up work altogether Change was entirely due to problems caused by dystonia
I have reduced my hours	I have reduced my hours No change	I have reduced my hours Change was not at all due to problems caused by dystonia	I have reduced my hours Change was partly due to problems caused by dystonia	I have reduced my hours Change was entirely due to problems caused by dystonia
I have changed the type of work I do	I have changed the type of work I do No change	I have changed the type of work I do Change was not at all due to problems caused by dystonia	I have changed the type of work I do Change was partly due to problems caused by dystonia	I have changed the type of work I do Change was entirely due to problems caused by dystonia
I have lost my job but am still seeking employment	I have lost my job but am still seeking employment No change	I have lost my job but am still seeking employment Change was not at all due to problems caused by dystonia	I have lost my job but am still seeking employment Change was partly due to problems caused by dystonia	I have lost my job but am still seeking employment Change was entirely due to problems caused by dystonia

Other (please specify)

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* 1. What part(s) of the body does dystonia affect?

Question Title

* 2. Which type of dystonia is it?

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* 3. How old were you (or the person you care for) on 1st January 2015?

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* 4. How old were you (or the person you care for) when symptoms of dystonia first appeared?

Question Title

* 5. What year was the dystonia diagnosed?

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* 6. Are you (or the person you care for) male or female?

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* 7. Do you (or the person you care for) currently live in the UK?

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* 8. Is treatment provided by NHS, private or both

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* 9. Symptoms caused by dystoniaOver the last 3 months, how severe were each of these symptoms at their worst?

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* 10. Other symptoms of dystoniaOver the last 3 months, how severe were each of these symptoms at their worst?

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* 11. Were you working when symptoms of dystonia appeared?

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* 12. If yes, then has your work changed since the dystonia started?

* 9. Symptoms caused by dystonia
Over the last 3 months, how severe were each of these symptoms at their worst?

* 10. Other symptoms of dystonia
Over the last 3 months, how severe were each of these symptoms at their worst?