Sunday, 12 February 2017

Physical Activity in Rare Conditions Collaboration (PARCC) Meeting

Right at the end of January the HSP support group was invited to attend the Physical Activity in Rare Conditions Collaboration (PARCC) Meeting in Cardiff. I attended with Ian Bennett. The group organising the meeting are just starting a piece of research looking at how to promote/support physical activity in people with rare conditions.

The research is being run by a group of researchers with an interest in rehabilitation for people with rare neurological conditions from three universities in the UK - Dr. Gita Ramdharry from Kingston/St George’s University,  Prof. Monica Busse from Cardiff University and  Prof. Jon Marsden from Plymouth University.

HSP was one of five conditions invited to the meeting, along with Muscular Dystrophy (represented by Muscular Dystrophy UK), Ataxia (represented by Ataxia UK), Huntingtons Disease (represented by the Huntingtons Disease Association) and Progressive Supranuclear Palsy (represented by the Progressive Supranuclear Palsy Association).

They have conducted initial research with Huntingtons Disease which has shown the importance of structured support and information to allow people to find ways of keeping physically active that they enjoy and helps them to manage their condition. You can read about this here:,  here: and here: This research shows that "a short-term exercise intervention is safe, feasible, and leads to significant improvements in fitness and motor function in people with HD"

The group of researchers has experience working with neurological conditions, physiotherapy and exercise, and they are looking to expand this concept to cover more rare conditions so that there is a sufficiently large program of work to bring people together, to have more study power and to give stronger, more conclusive results.

The initial starting point of the discussion was on the challenges around using physical activity as a treatment. The first step is to define what is meant by "physical activity" - this means different things to different people, and whilst it might mean specific exercises/activities to some, it might be more like just getting out of the house more often to others.

There has been a history of poor advice given, people have differing physical challenges, there are varying issues with access to facilities and costs, the support from professionals and/or carers varies, along with issues on motivation, choice and the time taken. Essentially the group is trying to get a good handle on these issues to develop a solution/intervention to support people.

Trial design was mentioned briefly, including this article on how you can design randomised trials for smaller populations:

Part of the day was spent with each charity describing the main features of each of the conditions, and taken together there are many strong similarities - principally that they all have a long term gradual deterioration in mobility, there are often mood changes with the conditions and day-to-day variation can be bigger than the long term changes. There were also some subtle differences, for example those with PSP and HD often are better in the afternoon, whereas some with HSP are better in the morning.

An interesting aspect was talking about how to get physical activity into the daily routine. With some the benefit might greater getting the activity as a routine before it is needed, so that it can be practised before it becomes difficult. Activities will need to adapt to peoples changing conditions - for example activity for someone who can still walk may be different from someone who spends most of their time in a wheelchair. There are also a range of personal factors which need to be considered - some people are happy to go to the gym, whereas others are more self conscious and would dislike going. Some people prefer to undertake activity in a group, whereas others prefer to do it alone.

Another topic is how the activity would be measured. The group are keen that the activity can be measured easily, and this might be by indirect methods - how often people leave their home or how their quality of life changes rather than how the specific activity might be assessed in the clinic.

The group are keen to develop a tool that is individualised, accessible when needed, meaningful, and focuses on what is trying to be achieved rather than the specifics of what could be done. Overall, I thought it was a really useful day, and I'm looking forward to the next stage.

Things which came up, to look up another day include:
Life Space Diaries: eg
Health Unlocked Forum:
Goal attainment scaling:
COM-M models:

Thursday, 26 January 2017

Intermittent Self-Catheterisation

Last week a nurse from the local incontinence came to visit, following a referral from my GP as a result of their letter from the HSP clinic in London. The main purpose of the visit was to measure my PVR (post voidal residual), but also for me to find out more about Intermittent Self-Catheterisation, or ISC for short.

It seems that ISC is a solution that some people go for with their bladder issues, and that has been a comment made in a few survey responses. I wanted to find out about this so that when it comes to making that decision myself I've got some knowledge.

Intermittent Self-Catheterisation

I was given a LoFric guide "Living with LoFric, A guide to ISC for men". I cant seem to find that brochure on line, but there are plenty of other similar ones on their site:

The bladder collects waste from the kidneys. The kidneys produce this continuously, and it is collected in the bladder so you can pass it when you need to. Messages are sent from the bladder to the brain to indicate that bladder needs to be emptied, and then messages are sent back down to both contract the bladder muscle and relax the sphincter muscle, which starts off the flow through your urethra. The process should continue until the bladder is completely empty.

A few basics are described - normally the bladder should not contain more than 350-400ml. Normally we urinate about 4 to 6 times a day and occasionally at night.

The ISC is a tube which is inserted along the urethra and into the bladder, which then allows your urine to drain. It indicates that it may take a long time for the bladder to drain. Advice is given if you find it difficult to insert the catheter (cough or try to pass urine), how to stop dips/drops (put your finger over the end of the catheter).

Advantages to ISC are given;
  • protects kidneys
  • reduces risks of unrinary tract infections (UTIs)
  • improve quality of life
  • improve comfort
  • reduce risk of complications and disease
  • improve continence
  • reduce residual urine
  • increase autonomy
  • not interfere with your sex life
It seems that there are a number of different products, and it is important to select the right option, length and diameter. The LoFric catheters have a hydrophilic coating which creates a very wet and slippery surface when activated by water, which minimises friction. Other catheters use a gel instead.

It is recommended that catheterising is done in clean and suitable facilities, but notes that such conditions are not always available, and some catheters include integrated sterile water and handling aids - useful if you're not able to wash your hands before starting.


Back to the nurse visit. She came armed with an ultrasound scanner. As might be expected I was unable to pass urine whilst she was here. She measured the amount of liquid in my bladder to be around 250ml, a couple of hours after using the toilet. I went to the toilet about half an hour after she left and measured my urine volume - about 250ml. My conclusion is that I dont have a high PVR, and therefore at a low risk of infection, so no need to alter what I'm doing at the moment.

Monday, 9 January 2017

Daily living scale study participation

The Rare Diseases Clinical Research Network or RDCRN is a US organisation designed to advance medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment and data sharing.

Within this there are a number of rare disease research groups, including CReATe - Clinical Research in ALS and Related Disorders for Therapeutic Development. This group includes:

  • sporadic and familial forms of amyotrophic lateral sclerosis (ALS), 
  • frontotemporal dementia (FTD), 
  • primary lateral sclerosis (PLS), 
  • hereditary spastic paraplegia (HSP), and 
  • progressive muscular atrophy (PMA). 

The goals of the CReATe consortium are to advance therapeutic development for this group of neurodegenerative disorders through study of the relationship between clinical phenotype and underlying genotype, and also through the discovery and development of biomarkers.

One of their current projects is to develop A Patient Centric Motor Neuron Disease Activities of Daily Living Scale for all of their diseases.

The text below is from their website, describing the study. If you have HSP (or one of the other diseases) you can take part. You answer a monthly questionnaire by email for a year, taking 10-20 mins each time. If you want to take part, sign up! I've done this.

Study Summary

The purpose of this study is to learn about rates of disease progression in patients with motor neuron diseases, as reported by the patients while they are outside of clinic. Another purpose of this study is to learn about clinical characteristics that patients report influence this rate of progression.


  1. What is the feasibility, ease of use, and rates of MND progression of a new patient-reported cactivities of daily living scale (PADL-ALS)?
  1. Can patient-reported clinical features predict disease progression using the PADL-ALS?
  1. How will rates of progression seen using the PADL-ALS compare to previously reported disease progression models described for the ALSFRS-R?

About This StudyTargeted Enrollment

Be an individual with one of the following:
  • ALS (Amyotrophic Lateral Sclerosis)
  • ALS-FTD (Amyotrophic Lateral Sclerosis - Frontotemporal Dementia)
  • PLS (Primary Lateral Sclerosis)
  • PMA (Progressive Muscular Atrophy)
  • HSP (Hereditary Spastic Paraplegia)

  • Other motor neuron disease
You cannot provide informed consent and complete survey

How to participate:

Functional rating scales have become the standard primary outcome measure for clinical trials of neurodegenerative diseases. The ALS Functional Rating Scale-Revised (ALSFRS-R) was designed to assess the ability of ALS patients to perform activities of daily living and to detect functional changes during clinical trials. The ALSFRS-R is quickly administered by research personnel or study staff (ten minutes) and is a rating scale that assesses capability and independence in 12 functional activities. The ability to use a patient-reported tool like the ALSFRS-R to assess patient function between clinic visits from the home would be a powerful new tool for clinicians to monitor the effect of interventions including: medications, orthotic devices, and respiratory or feeding support. In addition, the usefulness of a scale like the ALSFRS-R in the full range of MND is not known. We developed a new patient-reported survey which incorporates many of the key elements of the ALSFRS to be used by MND patients in between patient visits.

 The research questions are:
  1. What is the feasibility, ease of use, and rates of MND progression of a new patient-reported cactivities of daily living scale (PADL-ALS)?
  2. Can patient-reported clinical features predict disease progression using the PADL-ALS?
  3. How will rates of progression seen using the PADL-ALS compare to previously reported disease progression models described for the ALSFRS-R?
About This Study
This is a prospective 12-month study of patients with MND enrolled in CReATe Connect, an RDCRN Contact Registry. Participants will be asked to complete the survey every month for 1 year.
The survey will contain questions about participants’ diagnosis (such as age when symptoms started, where first symptoms occurred) and functional status (things like walking, eating, dressing, breathing). We will ask participants to update their functional status survey (15 questions) monthly for 1 year. Participants may choose to skip any question(s) that make them feel uncomfortable. It should take approximately 20 minutes to complete the survey the first time, then 10-15 minutes for each follow up survey.
Targeted Enrollment
To be eligible to participate, you must:
  • Be an individual with one of the following:
    • ALS (Amyotrophic Lateral Sclerosis)
    • ALS-FTD (Amyotrophic Lateral Sclerosis - Frontotemporal Dementia)
    • PLS (Primary Lateral Sclerosis)
    • PMA (Progressive Muscular Atrophy)
    • HSP (Hereditary Spastic Paraplegia)
  • or
    • Other motor neuron disease
You are not eligible to participate if:
  • You cannot provide informed consent and complete survey
How to participate:
If you have not done so already, please join CReATe Connect, a Contact Registry that has been established through the RDCRN! We will invite individuals in CReATe Connect to participate in this study.

Tuesday, 27 December 2016

Review of 2016

Another year has past and its time for me to reflect what has happened during the year.


This year I have learnt a lot. I have been to two conferences - the drug re-purposing one run in London by Findacure in February and the Ataxia/HSP one run by the Spatax network in Paris in April. Lots of bits of information has gone in, and I've been talking with various researchers and professionals at both conferences. I've also kept a brief eye out on the news reported by the US and Australian HSP groups.


Overall, I think that 2016 has been fairly stable. I'd been thinking that things were getting gradually worse, but my appointment at the HSP clinic suggested that my gait might be better. The various stretches, in-soles, bladder medication and Pilates mean things aren't changing quickly. Looking at my charts I think I've been a bit less depressed and with less fatigue than previous years, I might be spotting the return of more bladder/bowel issues though.

For a while during the year I logged my sleep patterns, and I'm fairly confident that my fatigue is predominantly due to lack of sleep, rather than any HSP issues.

This Blog

As last year, the readership of this blog continues to increase. I'm continuing to get year on year reader growth. My audience remains broadly the same (predominantly US, UK, Russia, Ukraine, France, Germany, Turkey, Canada). The most popular posts continue to be the results of my survey, the various presentations/posters given at meetings and my general posts on research and particular HSP symptoms.

I've had various comments made that people appreciate reading what I have to say, which I'm very pleased to receive and gives 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.


I was pleased that the results of my 2015 survey got similar levels of readership to my 2013 and 2014 surveys, confirming that these are of use and interest to people, and backing up my decision to do one each year, this year seeking opinions on matters to survey from others. I was very pleased to present the results of my first three surveys at the HSP meeting in Paris.

I'll follow the same path for the 2016 survey - analysis will start in the new year so I can analyse, write up and publish on 28th Feb - Rare disease day. This survey already has more responses that my other surveys, and there are still a few more days when I'll be taking answers!

Community Contribution

HSP Community activities for 2016 included:

  • Attending the drug re-purposing and HSP conferences on behalf of the UK Support Group.
  • Using my network (thats you!) to unlock HSP on the Re(act) community
  • Being an active member of the UK Support Group committee.
  • Publicising my companies volunteer days benefit by reporting what I've used them for.
  • Seeking out other on-line HSP communities principally to spread the word of my survey
  • Continuing this blog and posting/discussing HSP things on twitter.

I reflect that there are opportunities for better communication between similar condition support groups, to make the journey of mis-diagnosis potentially easier.

Tuesday, 20 December 2016

How far does my blog reach?

One of the questions I wonder about is where in the world do people live who read my blog. Blogger statistics give me the top 10 countries where people have clicked through to this blog, and I've been keeping track of this, and you can see this tracking on the blog statistics page My general observation was that readers are predominantly in the UK and US, and there is a reasonably consistent set of other countries where there are readers, frequently being in the top 10 on a monthly basis. Other countries do pop up on a weekly or daily basis, but there didnt seem to be much of a pattern.

Why do I ask this? Most of the HSP groups that I'm aware of are in the UK, US, Europe and Australia. There are a few groups from other parts of the world on Facebook. I'm trying to share my blog as far as I can, and I was wondering which other websites might be worth my visiting. A couple of years ago I found this link: with data from 2013 which shows that Google and Facebook "rule the world" as far as most frequently visited websites go. I've not found an updated version of this map, but the late 2016 position for global websites is here: and you can see that YouTube is in position 2. My initial thought was that I've got Google and Facebook covered - and its just a question of making sure I'm well searchable!

In discussion with colleagues at work the other month we were discussing Google Analytics, and I enabled that on this blog back in April 2016. This gives a much more comprehensive set of data, and I'm looking to work out how to integrate this information with the Blogger statistics for my long-term tracking.

Headlines are that since April 2016:

25% of my readers are return visitors and 75% are viewing the blog for the first time. There have been over 2000 individuals view the blog in that time, spending on average 2 minutes to read 3 pages.

The top 10 countries are similar to that shown by Blogger (percentage is number of times visited):
1. United Kingdom (33.55%)
2. United States (23.83%)
3. Russia (5.44%)
4. Canada (4.56%)
5. Brazil (3.94%)
6. Australia (3.80%)
7. France (3.55%)
8. Netherlands (2.16%)
9. Italy (2.06%)
10. Belgium (1.57%)

Overall there have been readers from 75 countries. I've had readers from pretty much every European country, the majority of the Americas, Oceania, and Asia, and perhaps a fifth of Africa. There are 26 countries where average time spent reading the blog is more than 1 minute.

Most visitors arrive via a search engine (34%), a link from another site (23%), visiting directly (23%) or through social media (19%). The other site links include the US, UK and Australian group websites ( and in the top 5, and a few of the European groups a bit further down the list. The social media top 3 are Facebook, Blogger and Twitter,


My blog does get quite far around the world, but there are some corners of the world where there are people with HSP where I dont know how they get their information. I'd welcome websites/info if you know any other groups than these:

A big thank you to all readers, wherever you are in the world!

Friday, 11 November 2016

Clinic Visit, Physio, Symptoms and Survey Update

Clinic Visit

Back at the end of September I went for an appointment at the HSP clinic at the National Hospital in London. This was very useful. We reviewed my symptoms and treatments, and made the following observations:


The view was that my gait has improved since my previous clinic appointment (May 2014 - This was a bit of a surprise, since I've been noticing some general deterioration in my gait recently. We discussed that the improvement is probably because of my physio, stretches and wearing the insoles (my referral for these came from this visit), and actually they have helped me quite a bit - it was just that I didnt notice the initial improvements from this. My conclusion is that I dont have a dataset to measure this against.

We discussed spasticity medication briefly. There is no need for me to start taking this yet, and we'll review again next year. Generally, the first one to try is Baclofen, and I would start on a low dose, increasing gradually until we saw some benefit.


I've not had an MRI scan so far, and there is a request for this in the letter to my GP. An adventure for 2017 no doubt. I understand that an MRI scan can be used in the diagnosis in order to rule out other possibilities, but the MRI scan will provide a marker to see any deterioration in the spinal cord.

Everything else!

We talked briefly about fatigue - not a big problem at the moment, bladder control - no need to have a post-void residual (PVR) at the moment as my medication has helped with the urgency. If my problems return then it might be time to start self-catheterisation. PVR is measuring the amount of urine left in the bladder after having a wee - probably done with ultrasound. During 2016 my medication changed from Detrusitol to Neditol, but these have the same active ingredient - tolterodine. We also mentioned my AFO's briefly, but not my Pilates.


I need to keep on with the stretches.


I also had another appointment with the physio as well - a new lady as my previous physiotherapist has retired. We went through my stretches and I got a few more tips to refine the ones I already do, and a couple of new things to try.

Cycling Monitoring

I've now moved into the world of monitoring my cycling. I have signed up to Strava and use my phone to track my cycling to and from work. My aim, over the long term, is to track any gradual changes in speed/time as a measure of change in spasticity. If anyone wishes to follow me, they're welcome to!

Survey Update

I'm now about half way through my survey collection, I've about 100 results, predominantly from the UK and USA. Thanks to those who have completed so far. If you can spare 15-20 mins I'd be very pleased for some more responses.

I've people across the range of mobility. Looking at fatigue, there are responses across the scale, and I'll see how this varies with mobility.

Some answers not too surprising: fatigue affects many people's walking and ability to do things requiring physical effort. Many people are shattered by the end of the day, and many who over-do know about it the next day. There is a mild preference for the NFI-MS scale.

Sunday, 6 November 2016

UK HSP AGM Presentations

Regular readers may have noted that instead of my usual reports from the UK HSP AGM I've posted from the international HSP/Ataxia meeting in Paris, which was on the same weekend. However, I'm also pleased to give details of the presentations given at the AGM. I've lifted these (with permission) from the UK HSP Newlink Newsletter.


Georgie Powell represented this small company and its innovative products.

The main product is a no-slip ferrule for both sticks and crutches. It is a modern design with an easily (and inexpensively) replaceable "foot" which clicks into place. This foot anchors into the ferrule base which remains tightly fixed to the stick or crutch. This approach allows easy replacement of a worn foot. The company also produce and sell several ranges of sticks in both traditional and modern styles.

Fully researched, designed and now approved by all the relevant certification bodies, Flexyfoot has a strong following in countries around the world. The current UK Health Service is a fragmented place to sell into and each health authority needs to be "sold to" individually. This cost too much time to be worthwhile - thus the company has concentrated its UK sales efforts towards the larger commercial outlets e.g. Boots. Such chains sell the products well, as do many independent mobility stores. The range of products is steadily increasing (more sizes and colours, differing stiffnesses.)

Plans are afoot to recruit staff in the larger foreign markets to promote/facilitate sales.


Debra Gordon and Lauren Moore represented Coloplast and updated us on some of the products they provide to help with the continence issues that affect many people with HSP. They began by informing us that it was currently World Continence week.

They discussed catheters and catheterisation and surprised many present by how small their latest catheters are for females. The male catheter has to be a certain length in order to work properly.

 They discussed male incontinence and how it can be managed by using a conveen which is a clever system where a sheath is worn and urine flows down a tube which is attached to the sheath and fills up a bag which is usually worn on the lower leg. This system was demonstrated using their dummy who I believe is named Boris.

They also discussed their bowel irrigation system called Peristeen. This equipment allows the user to fill the bowel with water and after a short period of time, the bowel naturally empties itself and can consequently prevent much discomfort.

Further information on what Coloplast can offer can be found on their website:

Odstock Medical

Dr Paul Taylor provided an update on the present status of the Odstock FES systems.

The devices provide electrical stimulus to nerves. The nerves then activate muscles. In HSP the most common use is to activate the muscles which raise the foot during walking, thus preventing the foot from "dragging". To achieve this, two pads are attached to the lower leg, and a switch is placed below a heel within a shoe. Once correctly placed, these can be used together with a control unit to supply pulses which activate the muscles.

Smaller and lighter devices were now in use, some of which clip to the leg and contain the pads - this makes the time to set up each day less. The foot switched can now link to the control box wirelessly, which also makes the system easier to use and less obtrusive.

Enough HSP users had now been supplied with the equipment that some measurements were possible showing the effectiveness of the device for HSP specific use. As a general rule it seems that use of FES improved walking speed over a measured distance by about 10%. There was also a corresponding reduction in effort as measured by heart rate.

Some of the patients who get benefit from the device are not able to perform the daily set-up routine themselves due to other physical or mental conditions. A surgical procedure has been developed to implant the electrodes along the relevant nerve. This removes the need to position the pads correctly each day. For these users the devices produce similar benefits to the normal equipment. The cost of the procedure and its invasive nature makes it only appropriate for a small group of individuals.

Amber Meikle-Janney and skiing - "HSP can’t stop me!" 

Amber is now 17 and gave us a video presentation of the ways in which HSP has affected her and how she was developing her skiing skills despite the condition. Although there had been some indications of onset when she was younger, she had been able to develop a love of skiing on holidays. We were shown some short videos of her aged 6 on skis.

Since the condition started to affect her more, she started to look for ways in which she could continue to ski. She found information on-line about the charity Disability Snowsport UK and got in touch. They have helped her to learn how to ski in a seated position on a mono-ski. Time for more videos, this time of Amber as she was learning - lots of footage of crashes, eventually leading to some long runs!!

Amber, with some help from her Mum, then demonstrated her mono-ski by transferring onto it and showing how she can use it to get onto a ski-lift. This is something not for the fainthearted!

Wednesday, 19 October 2016

Research Update

I'm a member of the Research on Motor Neuron Disorders: PLS, HSP/SP, and ALS
Closed group on Facebook. This is a really good group which keeps posting relevant news and information about HSBC.

This post just gives links to some of the information posted recently. I've only posted links to general stories rather than specific HSP studies. Big thanks to Rita Handrich for setting the group up and posting such good stuff.

This report shows that regular stretching boosts cardiovascular fitness if you can't undertake exercise.

This article describes using VR glasses to identify if people have a neurodegenerative disease (like HSP)

This report talks about chronic pain being it's own neurodegenerative disease, noting that there is often no identifiable source.

These are some non medicinal techniques you can use to control pain

This site reports a touchless catheter, which might be useful for some:

This article talks about care giving, but you need to subscribe to see the full thing.

This report indicates a link between weight and cognitive function - the higher your BMI, the higher your inflammation, leading to cognitive decline. Key message is maintain your weight to keep your brain on good form.

Friday, 7 October 2016

Hidden Costs of Rare Diseases - new report

Regular readers may remember me attending a drug re-purposing conference back in Feb this year

(reported here:

The item that caught my attention was the presentation about the hidden costs of rare diseases. I spotted the other day that Genetic Alliance have published a report on this very topic. The report is here:, linked from here

The report has some main findings:

  • Receiving coordinated care is important for rare disease patients, yet remains a challenge,
  • The full costs and benefits associated with different models of care for rare disease patients are unknown 
  • Patients and families face significant (‘hidden’) costs (both financial and psychosocial) associated with the way that their care is managed
  • There are significant limitations associated with existing data sets for rare diseases 

Whilst this is reported as being a feasibility study, within the report they have talked to various patients and carers, and there are some good observations on the difficulties which patients find, and they set out proposals for further research. They do identify and summarise these costs associated with rare diseases, which are very similar to those I heard in Feburary:

Costs associated with appointments: Time off work and reduced income; childcare; travel including petrol, public transport and taxis; parking; food and refreshments; accommodation; sundries; accessible vehicles and transport options.

Other financial costs associated with wider condition management: Private healthcare; childcare and respite; specialist activities and equipment; IT, internet and telephone costs (including paper and printing cost); prescriptions; fees for informal helpers and carers; disruption to employment and income.

Time: Time off work; time spent coordinating (‘project managing’) care and the various agencies and appointments involved; time spent fighting to access care and support.

Psychosocial, health and well-being: Disruption to schooling, employment and personal time; impact on relationships and social life; isolation; impact on identity and sense of self; living with uncertainty; mental health; fatigue; confidence and self esteem; anxiety and stress associated with appointments. 

Wider family: Costs identified above related to patients, parents and grandparents; siblings and wider support networks.  

Wednesday, 28 September 2016

Symptoms Update - Walking

A couple of things about my walking.

Firstly, during my summer holidays I went, with family, up to the UK Lake District. We decided to do a bit of walking whilst we were there. I decided to use my AFO for these walks, and it worked really well. I was a bit worried that I'd be much slower than everyone else, and that my legs wouldn't be able to cope with it. But, actually, four year olds go quite slowly and so there was no problem at all. I really enjoyed it, and so did the family, and we made the decision to do more walking when back at home.

Secondly, it must be true that my gait is starting to be a bit different - a couple of people have asked me if I've got a limp/am 'hobbleing' - which I'm not really used to yet. One of my colleagues at work (who I've know for a long time, but don't see very often) said this about year ago, but in the last month there have been several people who have asked. I've got to work out what my 'standard' response is for this question.

I've an appointment with the HSP specialists in London this week, so that's something to talk about with them.

Finally, a quick note about my survey - I've had an excellent response so far with about 90 responses! I'd welcome any readers with HSP to complete this, if they have not done so already. You can find the link here: