2018 Survey Questions (for translation)

The table below is all the questions from my 2018 survey. Its here to allow me to get an easy google translate of all of them. Use the translate tool on this blog to convert this list to the language of your choice. Answer in the questionnaire: http://hspjourney.blogspot.com/2018/09/2018-survey-open.html

Question	English
	1) Personal Details
	In this survey I ask for answers to two questions, your name and your country. I dont mind if you use your real name or a pseudonym of your choice, just enough to allow me to track people who may come back and answer any subsequent surveys. I am also collecting e-mail addresses, should you wish to be contacted about the results of this survey or participation in future surveys. All other questions are optional, so answer if you want or dont if you dont want to. After this page there are 7 more pages: 2) Mobility, 3) HSP Symptoms, 4) Sleep, 5) Activities of Daily Living 6) Support and Tracking, 7) Wellbeing, 8) This questionnaire and my blog By completing this survey your results will be used in the analysis to paint a picture of certain aspects of HSP. All analysis is anonymised. Your information will not be shared with any other person/company. The survey data is backed up using on-line file storage systems.
1	What is your name?
2	What is your City/Town/State/Province/County?
3	What country do you live in?
4	What is your e-mail address (for contact about these surveys)?
5	I only wanted to be e-mailed about these things:
5	The results this questionnaire
5	Future questionnaires
5	Not at all
6	Do you have HSP?
6	I have HSP - genetic test
6	I have HSP - other diagnosis
6	I am answering on behalf of someone else with HSP
6	I do not know if I have HSP
6	I do not have HSP
7	If known, what type of HSP do you have? (e.g. SPG4)
8	Were you diagnosed with any other conditions before you were diagnosed with HSP?
8	Yes
8	No
9	If yes, describe or list your other diagnoses.
10	Is there HSP in your family?
10	Other members of my family have HSP
10	Other members of my family do not have HSP
10	Some members of my family may have HSP
10	I do not know if other members of my family have HSP
11	Do you have any other long term health conditions?
11	Yes
11	No
12	If yes, please describe those conditions.
	2) Mobility
	These questions allow me to understand your level of mobility and to correlate your answers here with the other questions.
13	How does HSP affect your mobility at the moment? How did it affect your mobility in 2013?
13	HSP does not affect my mobility
13	I walk without aids, but there are some effects
13	I use walking sticks/poles/crutches some of the time
13	I use walking sticks/poles/crutches most of the time
13	I use walking sticks/poles/crutches all of the time
13	I use FES
13	I use orthotics/AFO
13	I use a rollator/walking frame some of the time
13	I use a rollator/walking frame most of the time
13	I use a rollator/walking frame all of the time
13	I use a wheelchair/mobility scooter some of the time
13	I use a wheelchair/mobility scooter most of the time
13	I use a wheelchair/mobility scooter all of the time
13	At the moment
13	In 2013
14	How has your mobility changed over the last 5 years?
15	How far can you walk?
15	I can walk as far as I want to
15	My spasticity means I get exhausted after a distance beyond 500m
15	I can walk up to 500m
15	I can walk up to 10m
15	I am unable to walk
16	Do you consider yourself to be disabled?
16	Yes
16	No
	3) HSP Symptoms
	This section explores which HSP symptoms you have. Most of the symptoms listed here are HSP symptoms, with some from 'pure' HSP and some from 'complex' HSP. Some of the symptoms listed are more general neurological symptoms.
17	Please select how you are affected by the following mobility symptoms.
17	Difficulty walking
17	Difficulty running
17	Difficulty using stairs
17	My muscles are stiff
17	My muscles are weak
17	Loss of balance
17	Regular falls
17	Get more stiff when it is cold
17	Get more stiff when it is hot
17	Do not have
17	Occasional symptom
17	Minor symptom
17	Frequent symptom
17	Regular symptom
17	Most of the time
17	All of the time
18	Please select how you are affected by the following muscular symptoms.
18	Stiffness/spasticity in arms/upper body
18	Poor co-ordination
18	Back/hip pain
18	Leg/foot pain
18	Clonus (jumping feet or other muscle spasms)
18	Epilepsy or seizures
18	Pes cavus (arched/high feet)
18	Hammer toes (toes curl under)
18	Affected by bladder problems
18	Affected by bowel problems
18	Difficulty swallowing
18	Legs swell up
18	Feet swell up
18	Do not have
18	Occasional symptom
18	Minor symptom
18	Frequent symptom
18	Regular symptom
18	Most of the time
18	All of the time
19	Please select how you are affected by the following other symptoms.
19	Fatigue
19	Stress
19	Depression
19	Numbness
19	Pins and needles
19	Ichthyosis (widespread persistent thick, dry, "fish-scale" skin)
19	Loss of vibration sensitivity in legs
19	HSP affecting learning or memory
19	HSP affecting hearing
19	HSP affecting vision
19	HSP affecting speech
19	HSP affecting sexual function
19	Fail to remember dreams
19	Changes in perceptions of smell/taste
19	Do not have
19	Occasional symptom
19	Minor symptom
19	Frequent symptom
19	Regular symptom
19	Most of the time
19	All of the time
20	Of these symptoms, describe which ones have the greatest overall effects/impacts for you.
21	Any other comments on these symptoms, or describe other symptoms you have.
	4) Sleep
	This page explores your sleep quality.
22	Please think about your sleep over the last four weeks and select the choice which best describes your situation.
22	Did you have difficulty falling asleep, staying asleep, or feeling poorly rested in the morning?
22	Did you fall asleep unintentionally or have to fight to stay awake during the day?
22	Did sleep difficulties or daytime sleepiness interfere with your daily activities?
22	Did work or other activities prevent you from getting enough sleep?
22	Did you snore loudly?
22	Did you hold your breath, have breathing pauses, or stop breathing in your sleep?
22	Did you have restless or "crawling" feelings in your legs at night that went away if you moved your legs?
22	Did you have repeated rhythmic leg jerks or leg twitches during your sleep?
22	Did you have nightmares, or did you scream, walk, punch, or kick in your sleep?
22	Did pain disturb you in your sleep?
22	Did other physical symptoms disturb you in your sleep?
22	Did worries disturb you in your sleep?
22	Did medications disturb you in your sleep?
22	Did needing the toilet disturb you in your sleep?
22	Did other factors disturb you in your sleep?
22	Did you feel sad or anxious?
22	Did you sleep in a bed at night?
22	Did you sleep in a chair at night?
22	never
22	sometimes
22	usually
22	always
22	Please describe any other factors which disturbed you in your sleep?
23	Any other comments on sleep
	5) Activities of Daily Living
	This page explores activities of daily living
24	Please select the answer which best describes your bathing.
24	Bathes self completely or needs help in bathing only a single part of the body such as the back, genital area or disabled extremity.
24	Needs help with bathing more than one part of the body, getting in or out of the tub or shower. Requires total bathing.
25	Please select the answer which best describes you getting dressed
25	Gets clothes from closets and drawers and puts on clothes and outer garments complete with fasteners. May have help tying shoes.
25	Needs help with dressing self or needs to be completely dressed.
26	Please select the answer which best describes your toileting
26	Goes to toilet, gets on and off, arranges clothes, cleans genital area without help.
26	Needs help transferring to the toilet, cleaning self or uses bedpan or commode.
27	Please select the answer which best describes your transferring
27	Moves in and out of bed or chair unassisted. Mechanical transferring aides are acceptable.
27	Needs help in moving from bed to chair or requires a complete transfer.
28	Please select the answer which best describes your continence
28	Exercises complete self control over urination and defecation
28	Is partially or totally incontinent of bowel or bladder
29	Please select the answer which best describes your eating
29	Gets food from plate into mouth without help. Preparation of food may be done by another person.
29	Needs partial or total help with feeding or requires parenteral feeding.
30	Any other comments on these activities of daily living?
	6) Support and Tracking
	This page examines if you are a member of a support group and how you track your progress.
31	Are you a member of a support group?
31	Yes
31	No
32	If yes, describe which support group you are a member of.
33	If yes, what do you think the key benefits of membership are?
34	If no, which of these best describe why?
34	i dont feel the need to be a member of one
34	I am not aware of any support groups
34	There are no groups near where I live
34	I feel it would be too much effort to be a member
34	I dont think the group would give me the support I need
34	Another reason
35	Do you track the progress of your symptoms?
35	Yes
35	No
36	If yes, describe how you track this
	7) Wellbeing
	This page investigates wellbeing.
37	Please select the option that best describes your feelings and thoughts over the last 2 weeks
37	I’ve been feeling optimistic about the future
37	I’ve been feeling useful
37	I’ve been feeling relaxed
37	I’ve been feeling interested in other people
37	I’ve had energy to spare
37	I’ve been dealing with problems well
37	I’ve been thinking clearly
37	I’ve been feeling good about myself
37	I’ve been feeling close to other people
37	I’ve been feeling confident
37	I’ve been able to make up my own mind about things
37	I’ve been feeling loved
37	I’ve been interested in new things
37	I’ve been feeling cheerful
37	None of the time
37	Rarely
37	Some of the time
37	Often
37	All of the time
	8) My Survey and Blog
	This final section aims to capture your awareness of my surveys and blog.
38	Did you take part in one or more of my previous surveys?
38	Yes, completed at least one
38	I started to fill out some answers
38	Didn't participate - I wasn't aware of these
38	Didn't participate - didn't want to answer
39	If you wish, please give me feedback about this survey, previous survey, or on my analyses.
40	Have you read my blog http://hspjourney.blogspot.co.uk?
40	I read regularly
40	I read occasionally
40	I have not read
41	If you wish, please give me feedback about my blog - perhaps things you like/dislike/would like to see etc.
42	If you read my blog, how did you become aware of it?