Thursday, 11 October 2018

Various awareness days

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

It is Rare Disease Day on the last day of February ( - this is relevant because HSP is a rare disease!

During May is Mental Health Awareness Week ( - this is relevant because many with HSP have difficulties with depression, stress or isolation

In the middle of June is Carers Week ( - 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 ( - this is relevant because the charities that support HSP are often small, dealing with a rare disease.

On 21st September it was Footdrop Awareness Day ( - this is relevant because footdrop is a common symptom of HSP

At the end of September it was National Inclusion Week ( - this is relevant because many with HSP have difficulties at work trying to balance their HSP with their jobs.

The 10th October was World Mental Health Day ( - this is relevant because many with HSP have difficulties with depression, stress or isolation

Coming up on 3rd December is the International Day of Persons with Disabilities ( - 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)

Saturday, 22 September 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.

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
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?

Annual survey - The background, the reasons and the limits!

Yesterday evening I used google translate to translate the "my survey is now open" message into various languages and post this on a multitude of different HSP groups on Facebook. There are a number of common questions which come up, and this blog post explores answers for these. Most of these questions have come up in previous years on the English groups, so the answers are still relevant.

One beauty of Blogger is the translate tool, allowing people from all over the world to read these posts.

Why do you want this data?

Back when I first had my diagnosis I was exploring websites giving the different HSP symptoms. There was little information about what they were and how common they were, and there was also little information about how quickly HSP progresses. Eventually I decided to find out more information by asking other people with HSP, and that formed the basis for my first survey in 2013. I set up an on-line questionnaire, and asked people to complete via support groups and facebook groups. There was a lot of interest in the results of this, and this set the precedent for the other surveys. Each year I look at a small number of topics and ask questions. I write up the results, and that gives others with HSP the same information to compare their own situation against.

I dont speak English....

This question comes up each year - can I see the questionnaire in another language? It is a tricky question. the constraints are:

  1. Access to a survey website which meets the requirements
  2. Making sure that translated questions have the same meaning as my English questions
  3. Time spent setting up, managing and analysing the results.
On the first, all of the free on-line survey hosting sites are limited to single language and a maximum of 100 responses. I easily get more responses than that, but I dont wish to spend my own money on a monthly subscription for a survey platform which I use once a year. The current solution is that I have a log-in to my employers survey platform, with the agreement that I can use it for one survey - it is the single language option. Some platforms do have multi-language options, but they are even more expensive.

On the second, when I have been looking at which standard tools I want to use to ask questions about certain HSP symptoms I spot that some of them have been translated into other languages, and been demonstrated to give the same results. By keeping to one language I avoid having to add another of interpretation. The other language list this year is: Spanish, French, Italian, Portuguese, German, Dutch, Swedish, Danish, Greek and Japanese. (Some of those groups are listed here:

On the third point, its very personal. I'm fitting in the survey and write up around my family and my job.  I think that running 11 surveys instead of one would at least double the amount of time that it takes me to do this.

Conclusion - I would be happy to run surveys in more than one language if someone else would pay to host these - a single sign in with a multi-language option would be best. I would also need to talk with others fluent in both English and those languages to make sure that the questions mean the same things.

Late Sept Update - since writing this I've now Google translated the questions into these other languages (and Norwegian) as a trial. I realise that I haven't had the translated meanings checked. I'll see what this does for my number of respondents and the analysis in the new year.

*** Please drop me a line if you are interested in helping! ***

Why dont you ask about....

I select a small number of topics each year. Some of these I will repeat on a 5 year rotation, others will come and go as needed. Summary:

Mobility, symptoms, misdiagnosis - 2013
Medication, exercise, diet, relaxation - 2014
Home modifications, depression, quality of life - 2015
Fatigue, bladder, bowel, HSP information - 2016
Pain, walking, occupation, wellbeing - 2017
Mobility, symptoms, misdiagnosis, sleep, daily living - 2018 

Possible future topics: Travel, grief, dating/relationships, life space logging, getting support, diagnostic tools used. 

I'm likely to repeat the 2014 medication questions in my 2019 survey.

Why dont you ask about my condition?

Some of the facebook groups are for HSP and similar topics. I get asked why I dont include questions for other conditions. The main reasons are; firstly the same as why I havent added additional languages - the extra time and effort involved, and secondly that I dont have a good understanding of what the key issues are for people with these other conditions. There would be a learning curve to understand this.

*** I am happy to discuss with anyone else my question selection process and my data analysis/interpretation processes, so that they could set up a similar survey for any other condition. Please drop me a line if you want to do this ***

Is my data safe?

The process I use is - use a survey platform to host the questions. I download the data to my PC and do all the analysis in Excel. I send emails using the BCC field for addressing. I included this data statement at the start of this years survey: 

"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."

Tuesday, 11 September 2018

2018 Survey Open

After the success of my previous surveys, and feedback from readers and others, I'm continuing the pattern with another survey this year.

My focus for this survey is understanding:

  • HSP Symptoms
  • Sleep
  • Activities of Daily Living
  • Support group membership and Progress tracking
  • Misdiagnosis

There are a range of questions for each topic. I have designed my own questions for symptoms, support group membership and misdiagnosis. Sleep is assessed using the Global Sleep Assessment Questionnaire (with a couple of additional questions added). Activities of Daily Living are assessed using the Katz index.

Last year I had good opportunity to explore which HSP factors affected Wellbeing, and these questions are repeated from last year, using the Warwick-Edinburgh Mental Well-being Scale (WEMWBS) for assessing positive mental health.

The list of HSP symptoms is expanded from my first survey in 2013, and I will examine change in symptoms between 2013 and now, where I have data. I will also examine change in mobility over the period I have been running surveys for those who have completed more than one survey.

Following the previous pattern, I will collect results until early 2019, then analyse these to publish the results here on rare disease day, 28th Feb 2019.

Also like before, all questions are optional (apart from your name and country). If you have taken part in any of my surveys before, I'd appreciate you using the same name to allow tracking.

Therefore, I would appreciate any readers with HSP to complete this years survey:

If you dont speak English then the following links will take you to a PDF which has the questions in English and other languages to help you answer. I will use Google translate to get your answers back to English for the analysis (French) (Portuguese)

** 5th October Update **

I have over 150 responses so far, the most ever at this time! Thanks to everyone who has completed so far. People are taking about 20 minutes to complete this survey.

Initial headlines:
·       About 80% of people regard themselves as disabled.
·       About a third of people were mis-diagnosed prior to their HSP diagnosis.
·       About a third of people have another long term health condition alongside their HSP
·       About 60% of people are a member of a support group
·       Symptoms affecting the most people:
o   Difficulty running/walking – 90%
o   Difficulty with stairs and/or balance – 85%
o   Feeling more stiff when cold and/or fatigue – 80%
o   Pain in lower body, bladder problems, stress, clonus – 60%
·       There is a big overlap in muscles feeling stiff and muscles feeling weak, each around 85%

I’d be really pleased to hear from more, so if you have HSP and a spare 20 minutes, please take part. If you dont speak English there are translation sheets for the questions into French, Portuguese, Italian, Dutch, Spanish, Swedish, Danish, German, Japanese, Greek and Norwegian. 

** 27th Sept Update **

Thanks again to those continuing to answer. I have now made those translation sheets for the other languages of the Facebook groups I have posted survey links to (Italian) (Dutch) (Spanish) (Swedish) (Danish) (German) (Japanese) (Greek) (Norwegian)

** 22nd Sept Update **

Many thanks to all the people who have answered the questionnaire to date.

There have been questions about if I can ask the questions in a different language. I have posted a page which contains all the questions, and you can use the Google Translate tool to convert from English into your language of choice:

The highest demand has been for French and Portuguese, so I have made a PDF which places the English next to the French or Portuguese so that you can print/have on screen and use this as a tool to answer questions. (French) (Portuguese)

Friday, 24 August 2018

3D printed walking stick holder

One of my wife's cousins has muscular dystrophy. He has been playing with a 3D printer and had developed a walking stick holder for his mobility scooter. The design is a circle that has been split and stretched apart. The walking stick is put in the holder on a diagonal through the split in the circle, and then when it is in the holder is put straight up, so is entirely held by the circle. He has mounted this on to his handlebar with cable ties (OK, I dont know if handlebar is the correct term, its my bike-mind-name. I guess it could be a steering bar, steering control, etc.....)

I think this is a genius idea! He says he will publish the pattern for this, and when he does I'll edit this post with a link. In the mean time, here are a couple of pictures so you can see this. I think that this design could work well for other mobility aids as well.

Monday, 20 August 2018

Symptoms Update - Increasing fatigue (bike and walk)

A brief post with a symptoms update.

I noted earlier in the year that I've been spotting the need to sit down earlier during the day whilst walking. In the months since then this has continued to happen, and I'll now need to sit down earlier and earlier. Interestingly after I have sat down for a while I'm fine to carry on walking again. If I'm walking stop-start then this doesnt happen, its just when I have to walk continuously for a while.

The need to sit varies with how I'm feeling and how quickly I am walking. So, if I'm walking more quickly then I might need to sit down after about 20 minutes, whereas if I'm walking more slowly then, with a few pauses here and there I can keep going for upwards of an hour (as noted by FitBits auto exercise tracker, and me remembering how I'm feeling).

As noted I'm tracking steps as well using FitBit, and the school holidays are an excellent record of how many steps I've been taking on those longer walking days. There are two days of note - I spent the day exploring Bristol with my boys looking for Wallace, Gromit and Feathers ( We had lots of stops, some travel by bus and boat, and I managed to get just over 20,000 steps. Secondly, I took my boys to London with my mum and sister. We went round the Transport Museum, and then did a bit of a walking tour including several of the touristy things (from Covent Garden to Waterloo via Trafalgar Square, Buckingham Palace, Horseguards, Whitehall, Downing Street, Big Ben and the London Eye). We did a few tube journeys and again, I just passed 20,000 steps.

Its a bit a contradiction, some days I am fine after so many steps, but other days I'm tired and I've only done 5000 steps. There doesn't seem to be any pattern with sleep as this is fairly consistent.

I also am starting to note the same thing on my bike - I can keep going for longer on my bike than I can when walking, but I am starting to find uphills more difficult, and I need to stop and rest after something like 30km (so thats something like 1.5 to 2 hours). I have done a few longer rides where I have tested this distance, so the new plan is to make sure that I have a pub/cafe stop every 30km or so!

Lastly, I'm also beginning to find it a bit more tricky to stand up from a full squat down. This might have something to do with missing a few stretches sessions out in recent weeks, but I think it is more likely to be a little more nerve breakdown and part of my HSP symptom progression.

Tuesday, 31 July 2018

AGM 2018: Functional Electrical Stimulation - Jon Graham

The final presentation at the AGM was an ad-hoc presentation by Jon Graham of Physiofunction (

Jon described that Functional Electrical Stimulation (or FES for short) was part of a rehabilitation triad that they use at physiofunction. The three elements of the triad are Physiotherapy, Exercise and Technology.

Where there is a muscle imbalance the FES system stimulates the nerve, this fires the muscle and causes it to move. The FES systems are usually positioned so that they lift the foot up when stimulated, often making it lift quicker than it would without the FES. The level of stimulation can be varied over time, as patterns in your gait change, and so that you prevent system over-loads.

The main centres for FES in the UK are Birmingham and Salisbury, and two of the main equipment manufacturers are Bioness ( and DM Orthotics, or DMO ( Jon noted that traditionally FES is provided by a unit which straps round your leg, the technology is moving on and it is becoming incorporated into a sock or membrane. You can get whole body systems, such as the Mollii suit ( which instead of having a few pads like the strap-on system can have between 45 and 50 pads.

There are four routes to getting FES on the NHS. Some regions have a commissioning service. You may be able to register as an "exceptional case". You may be able to regard FES as a mobility aid and get this through the back to work scheme, or you can go through a private channel.

NICE note that FES can be used to help footdrop of central neurological origin ( - which would include HSP.

FES can be used to help build muscles by use with FES Cycling, where the FES system helps you to pedal a stationary bike, and the pedalling helps build your muscles up again.

Jon concluded by mentioning the National Footdrop Society (

Sunday, 29 July 2018

AGM 2018: An overview of Occupational Therapy - Fiona Shea

The second presentation of the AGM was Fiona Shea, who is an occupational therapist. She gave an overview of occupational therapy.

Essentially an occupational therapist helps people achieve their aim. This might be by resolving physical issues, by looking at the person and the environment they live in, by looking at rehabilitation or posture. The practice is both generalised and specialised. Fiona noted that the physical issues that she resolved are not always physical issues, often she helps those with mental illness.

Occupational therapy works in a simple four stage process. The first stage is to assess the situation. The second stage is intervention planning, followed by the third stage of putting the intervention(s) in place. The final stage is to evaluate the intervention. The evaluation may show a need to re-assess and re-plan interventions, or if the intervention has been successful the patient would be discharged.

The assessment stage looks at the person and identifies what they are having issues with. Fiona described a model which is used by occupational therapists to show the inter-relation between the person, their occupation and their environment. I describe this model at the end of this post.

When interventions are being planned the can sometimes be small, and other times they can be longer term objectives, built up at an appropriate speed. The goal of the intervention must be smart (specific, measurable, achievable, relevant, and time-bound.) If the patient has accepted their condition/situation then this can make intervention planning easier.

Once the intervention has been planned, if it involves behaviour change then it is up to the patient to put this into place. If the person is not bothered by the issue then the goal has not been set right.

The evaluation stage becomes assessing if the goals have been met. If not, a re-assessment or re-setting of the goal may be in order. If the goal has been met then there is a need to look to the future to consider what may happen going forward before being discharged. 

CMOP-E Model
The CMOP-E model has been developed by the Canadian Association of Occupational Therapists ( and is called the Canadian Model of Occupational Performance and Engagement.

It is worth noting that occupation in occupational therapy doesn't mean your job or profession, it refers to humans as "occupational beings" - i.e. they live by undertaking a series of goal directed activities.  The picture below shows the model. The triangle is the person, with their spirituality at the centre - it is their driving force. The main factors considered for the person are the Physical (doing things), Cognitive (thinking about things) and Affective (emotions about things). The triangle sits on a circle representing the occupation, split into self care (dressing, eating, sleeping etc.), productivity (things done to help yourself or others) and leisure (things done for enjoyment etc.). Finally, the person and their occupation are in an environment. The four key factors in the environment are the physical environment (how accessible/near things are), the institutional environment (covering things like doctors/hospitals, employers, benefits etc.), the cultural environment (for example a persons customs and behaviours) and the social environment (friends, family, social groups etc.)

Each of these items are inter-related, and the OT has the task of identifying interventions to help restore the balance between these different elements. I found these links quite useful:

Wednesday, 27 June 2018

AGM 2018: A Carers Perspective of Living with HSP - Pat Reed

The first presentation of the AGM was one of the groups members, Pat Reed, giving us a carers perspective of HSP. Pats husband, Terry, has HSP, diagnosed in the early 1990's. He was additionally diagnosed with Parkinson's in the mid to late 2000's. This post is Pats story.

Pat described their initial journey with HSP, starting to use, and then making decisions at each stage as the needs change, using more or different walking aids. Additionally, they had an increasing need to plan toilet stops into journeys. The Parkinson's diagnosis came at about the same time as the move towards needing a wheelchair. The combination of HSP and Parkinson's is rare, and this is coming from the perspective that HSP is rare in itself.

The journey towards being a carer is slow, like the journey with HSP and its symptoms. In the early stages you don't consider yourself to be a carer, but as the HSP and the Parkinsons takes away the person that you love, that relationship changes into carer and cared for. As the changes are gradual there isnt a specific point when this switch happens, and that doesn't stop you from loving that person.

There is a large amount of team-work involved in this relationship, and the problems are always the conditions, never the person. Solutions are found which work, and these are developed over time as the symptoms change. At the moment, fatigue is key, with energy levels dropping it is a time to make difficult choices about what to stop doing, and what to keep on doing. Difficult decisions to be made when you enjoy and have passion for doing these things.

As a carer, as the condition changes and the need for caring increases, it is necessary to give up your own interests so that you put your energy into ensuring that your loved one can carry on going for as long as possible.

With two conditions, there is a lot of medication to be taken, over a 17 hour period each day. There are alarms and reminders, and the medication interferes with the lack of energy and the ability to have flexibility in your routine. Money has been spent on modifications have been made at home, with lifts, wet rooms, ramps and wider doors. The caring routine includes helping getting dressed, helping getting in and our of bed, helping going to the toilet and helping transfer to a wheelchair.

A range of different specialists have been seen, including occupational therapists, neuro-physiotherapists, and staff at a MS/Neuro centre. Each has been able to offer their help, but for limited times, and the changes to health conditions mean that it is not possible to get to the centre any longer. There have also been various visits to hospital, A&E, but also advice to avoid going to hospitals if possible. This means a further change in the relationship, from carer, to carer and nurse.

The tricky question is - what happens when something happens to the carer? One incident meant that the caring routine was disrupted by dizziness and sickness, such that the bare minimum was done, before getting back to bed to start recovery. In this case, there wasn't any home care available to offer respite during the recovery, so they ended up for a short stay in a care home.

After this, care was organised for two nights a week, offering some respite, but also some guilt, knowing that your loved one is not getting the respite that you are. Having visitors in your home right at the end of the day also means a change to the usual routines.

Being a carer needs you to be strong. It can also be lonely. The strength is needed to change the routines or the medication when you can see that the dis-benefits are significant and don't balance with the benefits. The strength example was a new medication which helped with sleep at night, but also didn't allow for getting things done during the day. The lonely example was the story of having to clean up after not getting to the toilet in time. Some planning is needed so the right things are in the right place at the right time, and a sense of humour and positive attitude are both essential.

The story concludes with a look back from the early days, when trying to get on the Eurostar. Some unsteadiness on the escalator meant they both ended falling over on their way up the escalator. Some other passengers helped to get the upright, but that hadnt stopped their luggage ending up back at the bottom, with no downward escalator. They were taken by the station staff, with their luggage, to the correct point on the platform to get on the train for their seats, and away they went!

Tuesday, 19 June 2018


Last weekend (June 9th) was the AGM of the UK HSP Support Group. The presentations made will cover my next few blog posts.

This blog post covers the AGM, and gives you the behind-the-scenes view of the approach. This AGM was my first as chair of the group, so I was a little nervous about it. I kept having thoughts running through my head - what I have I forgotten to do? who have I forgotten to contact? what will go wrong? Have I done enough preparation?

In the last few months us trustees had been working on several "big ticket" items, and the AGM was the place for those all to come into play. The key items were:

  • Voting in a new constituion
  • Reminding everyone about our data protection policy
The AGM was a success! We passed the threshold for being quorate and were able to vote in the new constitution and elect the trustees for the next period. We agreed the trustee report and accounts, and I was able to thank all the relevant groups of people (members, volunteers, fundraisers and researchers). The new constitution improves the definition around what we do, and allows us to do a few more things, which we need to consider over the coming months. Next step is to get this registered with the Charities Commission.

After the formal part of the AGM we had a set of group discussions. Again, I was a little nervous about how this would work. I had taken part in a set of group discussions at work a few years ago which used the World Cafe style ( and this worked fairly well for sorting out ideas at that time.

I decided that it would be a good idea to seek members views on what else we could be doing as a group, and through conversations with the trustees there were a number of topics which we wanted opinions on (specifically: complex HSP, young people with HSP, their parents and Fund-raising). We added a further two categories to cover other issues, giving six topics in total) My sister had also used this format at her work, and had said that they work well if you have good facilitators to guide the discussion along. I wrote to a range of UK HSP researchers to ask if they or their colleagues would be happy to be facilitators, and fortunately they were!

That had all the key components in place, and the last challenges were working out how to brief the facilitators so that they knew what we were trying to get out of the discussions and how to introduce the method to all our members. I was really pleased when members just got stuck in to the discussions. We had three good rounds of discussions - round 1 identified and prioritised problems, round 2 identified any solutions for the highest priority problems, and round 3 looked to see which of those solutions the group could do.

After the discussions were complete, each of the facilitator gave a summary of the thoughts and findings from their group. I was quite pleased to find that there were a good number of common themes from across the topics, and we'll be using those findings to work out a forward plan at our next trustee meeting.