Which muscles for walking?

Last year when I went to the PARCC meeting in London there was an interesting table taped to the wall which describes which muscles are used in walking. I took a photo of this, which you can see below.

I took this so that I could double check that my stretches were picking up all the walking muscles, and of course to understand a bit more about the process.

Seven muscle groups are mentioned, and I'm summarising those as follows:

• The iliopsoas are muscles to flex your hips - these are used between when you heel lifts off the ground until the leg is mid-swing.
• The gluteus maximus are muscles to extend your hips - they are only used when and just after your heel strikes the ground.
• The gluteus medius muscles are used to keep your pelvis stable whilst you transfer your weight from one leg to the other.
• The hamstrings muscles are used to bend your knee and flex your hip. They are in use whenever one set of toes are off the ground.
• The quadriceps muscles are also used to bend your knee. They are in use whenever toes are being lifted off the ground or when the heel strikes the ground.
• The pretibial muscles are used to move the lower leg forward and are in use while the leg is swinging. 
• The calf muscles are used to flex your foot are are used when the leg is being swung forward.

I found this page also quite useful: http://www.oandplibrary.org/alp/chap13-01.asp

The summary is that although I hadn't heard of some of these muscle names before I think I've got all the various walking muscles covered in my stretches. I have been interested in seeing how much the muscles are used in the walking cycle - with most of these in use for 50% of the time. The question which this doesn't help me understand is if these are the muscles for the leg in motion, which muscles are being used for the leg which remains on the ground?

The other knowledge gain is the difference between eccentric and concentric activation of the muscles. Concentric activation is the 'traditional' shortening of the muscle to do its job. Eccentric activation of muscles is activating the muscle whilst it is extending. http://muscle.ucsd.edu/musintro/contractions.shtml

Symptoms Update - driving

Just a quick post to note a subtle change.

Recently I've been noticing that I've become a bit sharp on my braking action. Effectively, when I begin to push down on the brake pedal I'm applying more force or my foot movement is larger than it used to be. Once I've got the feedback from the braking action its all under control again. It has happened a few times over the last few weeks, it does not happen every time I operate the brake.

Moving my foot on to the brake pedal is no problem and my suspicion is that I'm starting to lose the finest motor control in my legs. Of course, I dont know if the problem is:

• amplification of the instruction being sent from my brain to move my foot, 
• additional force needed to begin to move a tight/spastic muscle
• delay in relaxing the opposing muscle.
• reduction in feedback from my foot back to my brain to confirm movement
• degradation in my sense of proprioception (https://en.wikipedia.org/wiki/Proprioception)

Indeed I suspect that the true answer is that there some level of degradation in all aspects of this "instruction to move foot" communication. Its been interesting to think about the different elements of the apparently simple movement of my foot.

My notes to self are to observe if my heel is on the floor of the car or not when this next happens, to observe if this happens at the beginning or end of journeys and to identify if there are any other factors which are affecting my level of attention to driving.

2018 HSP Research Overview

I had a quick look at the PubMed papers with HSP in them published in 2018. My highlights are:

Spinal electrical stimulation reduces spasticity
A study in Italy tested Transcranial Direct-Current Stimulation delivered delivered over the thoracic spinal cord in a clinical trial for 11 people with HSP with treatment over 5 days and assessment over 2 months. Several measures were made, some showing improvement and others showing no change.
Spasticity was shown to be reduced, and it is suggested that this might be a complementary measure.
https://www.ncbi.nlm.nih.gov/pubmed/30508408

Botox injections shown to reduce fatigue
A study in Brazil examined the effects of Botox in 33 HSP patients. The Botox injections were shown to reduce spasticity in the adductors, although the paper notes that there was no significant functional improvement. The papers also examined non-motor symptoms and it was shown that fatigue was improved after the Botox treatment.
https://www.ncbi.nlm.nih.gov/pubmed/29809239

Future Treaments
Work in Germany has investigated the use of tideglusib in SPG11 stem cells and it was shown to rescue neurodegneration. It is identified as a candidate compound for future clinical applications for SPG11 and other complex HSPs :  https://www.ncbi.nlm.nih.gov/pubmed/30574063

Work in Germany has also trialled atorvastatin in a short term trial of 14 people with SPG5. This study didnt show effects on HSP as expected, but did control levels of 27-hydroxycholesterol which has been shown to correlate with disease severity and disease duration, thereby demonstrating a potential treatment strategy: https://www.ncbi.nlm.nih.gov/pubmed/29126212

More data on Bowel and Urinary Problems
Three studies have undertaken more work on quantifying bladder effects of HSP.
A study in Germany examined 71 HSP patients showing 75% having one or more urinary problems and reduced quality of life: https://www.ncbi.nlm.nih.gov/pubmed/30467602

A study in Japan looked at 12 HSP patients and similarly showed 75% having urinary problems: https://www.ncbi.nlm.nih.gov/pubmed/30391939

A study in Norway looked at 108 HSP patients and reported data on both bowel and urinary problems. For bowels they show 15% are affected by constipation, 8% are affected by alternating constipation and diarrhoea, 48% have uncontrollable flatulence, 12% have fecal incontinence, and 39% have an inability to hold back stools. Urinary complaints included 27% needing to urinate more than 8 times a day, 52% having sudden urgency and 31% having urinary incontinence at least daily/nightly: https://www.ncbi.nlm.nih.gov/pubmed/29661209

Worth a read:
There are three other papers which I think are worth a read:

A study in the USA notes that the more recent genes for HSP are rare and there is likely to be a diagnostic gap. https://www.frontiersin.org/articles/10.3389/fneur.2018.00958/full

HSP is specifically included in this estimate of the global burden of disease for motor neuron diseases. The study doesnt report any specifics for HSP, but reports that the burden from motor nuron diseases on health systems is likely to increase substantially in coming decades:  https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(18)30404-6/fulltext

A study from the USA reviewed the cases of 174 children referred to a neurology clinic for toe walking. 62% were found to have a neurological condition. Of these the most common diagnosis was cerebral palsy (37%). HSP was shown in 14% of cases, with peripheral neuropathy and autistic spectrum disorder ranking between CP and HSP. https://insights.ovid.com/pubmed?pmid=29309384

Review of 2018

Once more it comes near to the end of the year, and it is time for me to reflect on the years activities.

Knowledge

My key learning has been around activities with the HSP Support Group - I've been looking at safeguarding, which is still a work in progress. There have been a few interesting articles around exercise and HSP (or strictly neuromuscular conditions), and there was a load of really interesting analyses from my survey results - particularly the pain and walking side of things, and I liked the wellbeing analysis as well.

Symptoms

I had the results of my MRI scan - all OK (blog post on this in early 2019!). I am definitely becoming more distance limited, and am finding the need to sit more often, and it looks like my shoe wear rate is still increasing. There hasnt been much noticeable change in other symptoms, although perhaps my bladder is being to re-annoy me (blog post on this in early 2019!). I may also be getting more tired, but there are so many other things going on at the moment that this is difficult to point at HSP.  

This Blog

I'm really pleased with the continuing growth in readership of this blog! My audience remains broadly the same (predominantly US, UK, Canada, Australia, and then European countries. The most popular posts continue to be the results of my survey and my general posts on research and particular HSP symptoms. 

I now have a second year of Google Analytics tracking, which helps inform my blog statistics page. I'm really pleased that blog posts are being linked to and used within other HSP and RareDisease publications. Thank you to all my readers.

I continue to get comments from people appreciating what I have to say, which I'm very pleased to receive. Feedback like this gives me another reason why this is a worthwhile thing to do. Thank you to anyone that makes a comment or connects up with me in some other way. A couple of my favourite comments about the blog from this years survey are:

"Newly diagnosed so found blog in general search trying to gain more info. Your blog seemed to mirror my symptoms over the past few years. I finally have an answer to my pain and problems."

"Appreciate all the effort you put in to the surveys and sharing your personal experiences"

Survey

The now annual pattern of my surveys is well established. My 2018 survey has a similar number of responses to my 2017 survey, perhaps with a few more participants (although at the time of writing I've not discounted duplicates and empty answers). My new feature this year has been to offer translation sheets for the survey in a number of other languages so that I can get a wider spread of answers, and a quick glance at the answers shows that some have answered in languages other than English, so this has worked well. If you're reading this and want to take part then (providing it is still 2018) please do! Results will be out on 28th Feb after the majority of analysis during January.

Similarly, its good to get feedback on this. Three of my favourite comments from this year are:
"Some of the questions make me think about what I could be doing better."
"I enjoyed filling out survey to help others"

"Excellent survey. It’s interesting to compare my symptoms to others. "

Community Contribution

HSP Community activities for 2018 included:

• Being re-elected chairman of the UK Support Group!
• Continuing talking with people from other HSP groups
• Expanding my survey into more languages
• Analysing and reporting the results of my survey to share with the HSP world
• Coordinating the UK HSP Support Group response to consultations
• Continuing this blog and posting/discussing HSP things on twitter.

The main element of my community contribution comes from being chair of the HSP group. There are many issues, and I'm working with the rest of the trustees to ensure that the group continues to support its members in the most appropriate way. In 2019 I'll be working with the PARCC research project. More on that during 2019.

HSP in the news

Last year I mentioned Lily Rice, and this year she continues to be an inspiration, promoting and competing in WCMX. She also became Radio 1 Teen Hero during the year.  https://www.westerntelegraph.co.uk/news/16994523.lily-rice-named-bbc-radio-1-teen-hero/  and https://www.westerntelegraph.co.uk/news/16152411.manorbier-teenager-claims-silver-at-californias-world-wheelchair-motocross-championships/ 

Over in Australia there seems to be quite a bit of news on their programme to develop a treatment for HSP. They are currently in the process of preparing for a clinical trial (https://hspersunite.org.au/hsp-clinical-trial-program-update-december-2018/) following the pre-clinical trials (https://hspersunite.org.au/hsp-clinical-trial-program-update-june-2018/). I'm keeping an eye out for the results of those pre-clinical trials. Readers will note that the drug being trialled is Noscapine and it will be trialled on patients with SPG4, 

More new shoes

Its time for some new shoes again!

I have got through another two pairs of shoes, the Sketchers which I bought in April 2017 have now run their course, with a new pair bought in December 2018. This means that my sketchers lasted 1 year and 7 months, indicating that my rate of wear has gone up in the last year, with the previous pair lasting 2 years and 2 months.

Although my left shoe has a higher rate of wear than my left shoe, the interesting observation is that the wear on both shoes looks similar, perhaps indicating that the progression on my right leg is catching up with the left leg. Here are a couple of pictures - noting that my left shoe is on the right of both pictures:

You can compare these with the post I put in my May 2017 with my previous shoes: https://hspjourney.blogspot.com/2017/05/shoe-wear-update-data.html

This time I have chosen to replace them with some hi-tec waking shoes, so we'll see how the rate of wear on those goes.

In the other post I noted having bought replacement trainers as well as replacement shoes. Shortly after this I also bought clip-in shoes for my bike, so the new trainers from that time have had much less use, and the clip-in shoes are also bearing up well.

My other replacement pair of shoes this time is some shoes for work. I had decided that these were not looking good enough for wear in the office, so I have a new pair of work shoes. There has been shoe shuffling, so the pair now in my office are my other older pair, with the new shoes staying at home - this is principally because I cant get the inner sole out of the new shoes and I'll wear those without insoles. My other pair of shoes takes the insoles nicely, and those have moved to the office with the insoles.

You can see the wear pattern of the old shoes in these pictures. The left shoe is slightly more worn on the tip than the right shoe, but the wear on the right shoe is more round the corner. Whilst at work I go on less fun walking, so the majority of the wear is from indoor use - although I do try to get outside for half an hour at lunchtime most days. I do not recall how long I have had these shoes. Note again that my left shoe is on the right of both pictures.

HSP in the news

There have been several HSP stories in the news recently which I thought worth sharing.

The benefits of stretching

This story was on the Australian HSP site this week: https://hspersunite.org.au/daily-duration-stretching-pays-off/

In summary, nine patients with HSP took part in a study where they were given a stretching routine to follow. The stretches were high load long duration stretches for specific muscles. Each person was reviewed and given their own routine. Stretches were undertaken six times a day for 15 minutes a time - so 90 minutes a day stretching, completed for more than one year. The muscles were selected based on how short they had become.

The outcome was assessed in terms fof range of movement for the muscle and ambulatiopn speed. 40% had higher walking speeds, half had better range of movements. two thirds were in a higher ambulation category.

This shows that regular stretches really do help HSP. The study also included patients with hemiparesis, and the abstract doesnt describe if the proportion of people with improvements was the same across both conditions.

Dancing with HSP

This website was posted on the Spatax website: https://www.clickanddance.com/videos - it gives a sequence of videos which you can follow to improve. Two sets of videos are given, one for those who can stand un-aided, and antoher set for those who need the help of a chair. Dancing is a physical activity, so good for health, and the use of different muscles can help. You may even enjoy it!

Original post: https://spatax.wordpress.com/2018/11/14/danse-to-improve-your-well-being-even-with-ataxia-or-spasticity/

Incontinence Pants

This story caught my eye on the BBC news feed. (https://www.bbc.co.uk/news/business-46220556) Its not directly related to HSP, but I thought worth a mention. This company makes incontinence pants for ladies that look like pants! https://www.giggleknickers.co.uk/. Their story comes from mild incontinence following surgery, but the same factor is true of HSP, and these pants are machine washable.

Vibration sensitvity / numbness

I had seen loss of vibration sensitivity in the legs as one of the potential HSP symptoms. At work I deal in noise and vibration, and so this had caught my attention.

Wearing my "work" hat I was determining that generally we dont experience vibration that often, and I know that humans are quite sensitive to vibration. I was trying to think of a situation when you would know that it is vibrating whilst at the same time noticing that you weren't feeling it in your legs. I couldn't think of a situation like this!

However, earlier in the year I went to the HSP clinic and they tested my vibration sensitivity, and it was actually very easy. A tuning fork was set vibrating, and the handle was then placed on my leg - could I feel it? And so, my vibration sensitivity is retained for now (at least).

I wondered where the origins of this came from. A quick bit of internet searching suggests that the use of a tuning fork to detect vibration sensitivity is usually credited to Heinrich Rumpf, who published findings in 1889.

Various extracts from articles:

The use of the tuning fork to clinically test vibration sense is generally credited to Heinrich Rumpf, professor and director of the poliklinik in the University of Marburg, who published his findings in 1889. A controversy surrounded its significance. Tomson, Treitel, Rydel, and Seiffer argued that it was a discrete sensation, sometimes impaired when touch and pressure sensation were preserved, in tabes and polyneuritis. Egger in Dejerine’s clinic, and Schwaner, thought that the receptors lay in the periosteum but the sensation (pallaesthesiae) was conducted by bone. However, vibration sense was not generally accepted as a valid clinical test for another 10 years.
https://jnnp.bmj.com/content/65/5/728

 Although vibratory sense had been described by Cardano and Ingrassia in the 16th century and tests had been developed by Rinne and Rumpf by the 19th century, it was not until 1903 that Rydel and Seiffer found that vibratory sense and proprioceptive sense were closely related and that both senses were carried in the posterior columns of the spinal cord. By 1955, the sensory examination included tests for light-touch, superficial pain, temperature, position sense, vibration, muscle (deep pain), and two-point discrimination.
https://www.thieme-connect.com/products/ejournals/abstract/10.1055/s-2002-36762

I couldn't find an easy article describing when vibration sensitivity became part of the standard neurological test, but it would appear to be somewhere between about 1900 and 1955.

My next path is to look at early mentions of vibration with HSP, and see when that was first mentioned. Finding copies of old medical journals on-line for free is a challenge! This paper from 1963 notes that loss of vibration sense is one of the more frequent "additional" symptoms of HSP - it's about two thirds of the way down the left hand column on page 518.  here https://jnnp.bmj.com/content/jnnp/26/6/516.full.pdf. Assuming that the text on P518 is referring to the referenced articles, it suggests that it was spotted either in the early 1900's or in the 1950's. Further investigation is required.

I note that this paper also has references for a load of the early HSP papers!

Taking control of your healthcare system

As I have been going through my HSP journey it has become apparent that I have to be in charge of my healthcare. I perceive that if I didn't do this things just wouldn't happen.

Whilst there may be a degree of local circumstances in my case, i don't think that I am untypical. It is also my preference to know what is going on and to be involved with sorting it out.

Here in the UK it is the Doctor (General Practitioner, or GP) who is able to give access to other parts of the health system, so it is useful for them to know you. In my situation the GP has many doctors, and I rarely see the same one on consecutive appointments. All other parts of the health service write to your GP with their findings, and the GP then makes the relevant booking/prescription/etc.

I have found that I have needed to chase up appointments, and make sure that things are in progress. As HSP is a rare disease, i often have to give a summary of what is going on and why we are trying to do things.

Summary of ley appointments:

Doctor appointment in 2014:

• Referral to HSP clinic - OK although some confusion over clinic code
• Referral to low mood clinic - easy
• Eliminated some bowel problem causes, started path to see others.

From 1st HSP appointment:

• Bladder medication - prescription from GP - easy!
• Referral to neuro-physiotherapist - easy. Stayed on their books.
• Referral to orthotics - easy.
• Bowels discussion - needed to chase to gey appointments, took a long time.
• Ultrasound scan of bladder - discussion, no action.

From 2nd HSP appointment:

• Booked directly with clinic as returning patient. Some hassle
• MRI scan - had to send clinic letter to scan team to show need. Lots of hassle. Also had to chase getting results to HSP clinic.
• Bladder ultrasound - discussed not needed, but appointment given.

My advice is:

• Know what appointments you are trying to get and make sure that you get confirmation of things.
• Assume that no-one talks to each other and that no-one knows what HSP is or how it affects you. You are the expert!
• Realise that a slow acting condition can be a good thing in terms of having to wait for appointments!
• Keep copies of your letters from clinics/appointments so you can refer back to them.
• Note down questions as they come to you, then you only need to find your notes at appointment time!

Various awareness days

Here is a calendar of various awareness days and weeks throughout the year.

February
It is Rare Disease Day on the last day of February (https://www.rarediseaseday.org/) - this is relevant because HSP is a rare disease!

March
The 1st March is International Wheelchair Day (https://internationalwheelchairday.wordpress.com/) - this is relevant as many with HSP need a wheelchair to help their mobility.

March 16th 2019 was Disabled Access Day, which is scheduled to return in 2021 (https://www.disabledaccessday.com/home/). The day is about encouraging people to try something new. This is relevant as many with HSP have difficulties getting into places and undertaking activities.

May
During May is Mental Health Awareness Week (https://www.mentalhealth.org.uk/campaigns/mental-health-awareness-week) - this is relevant because many with HSP have difficulties with depression, stress or isolation

June
In the middle of June is Carers Week (https://www.carersweek.org/) - this is relevant because many people with HSP need care, and some with HSP are providing care for others.

Near the end of June it is Small Charity Week (https://smallcharityweek.com/) - this is relevant because the charities that support HSP are often small, dealing with a rare disease.

September
On 21st September it was Footdrop Awareness Day (https://www.nationalfootdropsociety.com/) - this is relevant because footdrop is a common symptom of HSP

At the end of September it was National Inclusion Week (https://www.inclusiveemployers.co.uk/national-inclusion-week/about) - this is relevant because many with HSP have difficulties at work trying to balance their HSP with their jobs.

October
The 10th October was World Mental Health Day (https://www.mentalhealth.org.uk/campaigns/world-mental-health-day) - this is relevant because many with HSP have difficulties with depression, stress or isolation

December
Coming up on 3rd December is the International Day of Persons with Disabilities (http://www.un.org/en/events/disabilitiesday/) - This is relevant because many with HSP consider themselves to be disabled.

I'll update this page as I become aware of other dates in the year.

(I started this post to note inclusion week, mental health day and persons with disabilities day. Then I realised there were other things I'd noted throughout 2018)

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?