Bladder Update

I wrote recently about my bladder ultrasound scan, and the conversation about having significant urine retention. I recently had another appointment at the hospital. I was asked to keep a urine diary for 3 days, where I had to measure everything I drank and how much urine came out.

The how much out scores were that I go for a wee about 12 times a day, and that typically 200-300ml comes out each time. There's a bit of variation in how often and how much. I'm quite pleased that I dont often need to get up in the middle of the night to wee.

I returned to Southmead with a full bladder. They wanted to test my urine for infections. I 'delivered' a sample of just under 200ml which was tested. They then measured how much was left inside me, with a volume over 500ml - i.e. my full bladder was larger than it was at the previous appointment.

We discussed the retained urine, and if there is a large quantity of retained urine there is a risk of kidney infection. So, whilst the intermittent self-catheterisation reduces the risk of kidney infection, it comes with increased risk of urinary tract infection.

The advice for me is to start using intermittent self-catheterisation. I had a go at doing this in the clinic, which felt quite unusual! No particular surprise to see about 500ml of urine in the container at the end. That will be the emptiest my bladder has been for quite a few years. The advice is for me to do this twice a day, once in the morning, and once before bed.

Fatigue Update

Next up in the series of recent things going on, I've been finding that I feel more fatigued than previously. Its a blend of both physical and mental fatigue.

On the physical fatigue side, the updates that I've written about in recent days are all signs that my mobility is getting slower, and that more effort is required to move about. So, that fairly easily captures that side.

The mental side has several components. The obvious one is that with the knowledge I have about HSP, I can see myself in the future, where mobility is more difficult, and my reliance on the help of others is likely to increase. Whilst I've been working hard to influence the attitudes of people around me that disability is not negative, that influence only goes so far, and there is still a lot of general societal perspectives that disability is negative. Its not comfortable to see myself through that lens.

In parallel with this there are also lots of things going on outside of HSP world. In summary the three headline items are: There was a lot of effort needed to help my eldest through GCSE's, and more effort needed to help him with getting a good start at A-levels. There's a lot going on with my mum, and I feel guilty about being half-way across the country - my sister is carrying a lot of the load there. Lastly, my divorce continues to rumble along.

The last element of life is my work. This has been carrying as it has been in recent years, with some times more challenging than others. A conversation with a friend recently added a fourth reason to the list of why I work there; nice people, interesting projects, I have been treated well, and I am aligned with the approach to the quality of our work. 

The result of all of this is that It's not much fun getting to halfway through the evening and not feeling like I have any energy to do anything. It means that my social media scrolling has increased, and I'm sure thats not good for me. This post is all about getting to a change I'm making in the new year at work. 

Having been in my new house for about a year and a half, I'm finding that expenses are fairly consistent. So I'm choosing to drop the number of hours I work each week. I currently work 36 hours a week, which is 4.5 days a week. I originally dropped the half-day to allow me to do half the school runs, but it has subtly morphed into fatigue management. In January I'm dropping to 33 hours week, which gets me an hour back on three days out of 5. Yes, there's an equivalent drop in salary, but I'm hoping that those three hours help me get more energy in the evening so that I can do more things that I enjoy instead of not much. I will find out after a few months if that has made a difference and/or if I can cope with the lower salary.

Pilates and Muscle Update

My next update is an observation on how my muscle strength is changing over time. Readers may remember me describing this back in April https://hspjourney.blogspot.com/2025/04/symptoms-update-muscle-weakness-quads.html.

The latest update is to note that when I'm sitting down and wanting to raise my foot, I'll often grab my knee and use my arm to assist in moving my leg up. I'm also noting that its getting a bit more tricky to life my foot up when putting my socks on in the morning.

However, the place where I'm putting my body in the most unusual/distinctive postures is during Pilates. Over recent months I'm evolving my adaptions to help me make the movements. So, for seated movements I've been sitting on a block to allow my spine to be more upright. Here, I'm using another block in front of me or to the side of me so that I can more easily reach the ground. 

There are also extended positions where I can get my body into the position, but then find it difficult to move either those extended parts or other parts of my body. In this situation I have the choice either to hold the extended position, or to relax the extension and focus on the movement aspect.

Observing this about myself, and reminding myself that quads are important in walking, is beginning to let me see that it's not going to be too long until I'm going to need wheels to allow me to move about more freely. I'm not yet clear about what style wheels I'll go for first.

In the slightly longer term, my Pilates instructor also does seated Pilates classes, so I will be able to carry on with that even after the mat classes I attend become too difficult. 

Decreased muscle strength also means that my stair-climbing ability changes, and my falls risk increases, so those thoughts are beginning to move forwards in my mind. These thoughts now echo with my recent conversations with the occupational therapist. https://hspjourney.blogspot.com/2025/12/occupational-therapy-visit.html

I also need to consider muscle changes in my weight monitoring. Historically my muscles have been fairly stable, and my weight variation is entirely down to how much fat I carry around my midriff. If my muscles are beginning to shrink, that might be a weight change factor.

Occupational Therapy Visit

In the middle of November I had a visit from the occupational therapy team at my local authority. As noted in June, it was going to take a while as I am comparatively low on the priority list.

I had a good conversation with the (occupational therapist) OT. She said that she has worked with another person with HSP, so there are enough of us out there to be known!

Useful information:

• When I come to needing a mobility scooter, I can go to my local mobility centre. There are people there who can advise on the various factors which I will need to consider (weight, size, distance/range, terrain ability, load carrying, weather situations, and so on...). For me, this centre is in Fishponds: https://www.drivingmobility.org.uk/information-centres/view/bristol/
• If I wish to talk to a counsellor, I can refer myself to talking therapies. She particularly noted that they offer training in energy management, which I think will become more important as time goes on. My local link is here: https://vitahealthgroup.co.uk/nhs-talking-therapies/bristol-north-somerset-and-south-gloucestershire/
• My local authority have a house which has lots of accessibility adaptions made. I can book an appointment and go and work out which of these may be useful for me in the future. For me, this is in Yate, which is a few miles away:  https://life.southglos.gov.uk/kb5/southglos/directory/service.page?id=t4KaI-tTVRg

There was a good discussion about how things that the OT can provide are funded. They basically have two teams: Occupational therapists assess people, and the Housing team assess buildings. There are various funding streams available, depending on which team and the size/cost of the adaption needed. The items provided by the OT team are not means tested. Small items are provided easily. Larger items (>£1500) have a further process to go through. For housing items, there are two different relevant government Acts of parliament. Small adaptions are not means tested, and are provided through the Care Act. Larger adaptions are means tested, and are provided through the Housing Act. There is a Disabled Facilities Grant available, provided you intend to stay in your house for at least five years. Where costs are means tested, there is a cumulative limit. If you need multiple adaptions, the costs are aggregated together for the means testing.

For me we ended up talking about the absence of a downstairs toilet. There are two obvious routes - one would be to install a downstairs toilet, the other would be to add a stairlift to allow easier access to my upstairs toilet.

Her three main areas for me were: Falls risk, energy management, and future-proofing my house.

I think that my likely items are house adaptions in the small zone - adding a second banister, and getting some blocks to raise the level of my sofa's up a bit higher. There are a lot of other things which I am likely to need in the future, but not right now.

Bladder Ultrasound Scan Results

Back in the middle of July I began the next set of appointments following on from the trip to the National Hospital in January. I noted in a post in June that my appointment had been set up.

I went to the urodynamics part of my local large hospital (Southmead). They used an ultrasound to check my bladder, my prostate and my kidneys. The headline result is that my full bladder had about 550ml in it. I then went to the toilet and they measured again, with there being about 230ml left. This was described as "significant retention".

My kidneys are normal in size and appearance. My prostate is slightly enlarged.

This result then triggered a discussion with my GP, which covered the usual things:

• I have strong urge to go when my bladder is full
• It takes several trips to the toilet for my bladder to empty
• We talked about catheterisation (which I had previously talked about in 2017)
• Referral to functional urology at Southmead for further assessment and discussion.

So, whilst my trip to the National Hospital talked about a referral to a neuro-urology team, I appear to be getting the same information via a different route. 

New shoes, new ferrules and new poles!

I realise that it has been several months since my last update. Plenty has been going on, so there will be a quick flurry of posts as a record of relevant things.

My shoes reached the end of their life back in October, looking like this:

The immediate observation is that the wear on both shoes is similar, which suggests that using my walking poles has helped my mobility, allowing both legs to behave similarly.

The dataset of shoe use now looks like this:

Shoe Date	Months
Sep-14
Apr-17	31
Nov-18	19
May-20	18
Oct-21	17
Dec-22	14
Nov-23	11
Jun-24	7
Nov-24	5
Oct-25	11

This also means that I'm back, roughly, on a pair of shoes per year. Once again the new pair are Karrimor. Previous post: https://hspjourney.blogspot.com/2024/10/symptoms-update-new-shoes.html

Also, a week or two ago I finished getting through another set of ferrules for my poles, with a similar wear pattern to last time:

This means that the rate of wear of ferrules is about a new set every 4 months. Previous post: https://hspjourney.blogspot.com/2025/08/ferrule-change-again.html

In the last month my poles have also failed, which was to do with the twist lock failing. I managed to get a different set in the Black Friday sale, but my initial thought is that I dont like the shape of the handle as much, which adds another factor into choosing poles.

I'm not minded to track poles as a dataset, although it is interesting to note that I had just over a year of use from the first ones. The new ones are collapsible, but in a different way. The first ones twisted and smaller sections slid up within larger sections, whereas the new ones are all more like a tent pole. In reality I had the original poles for quite a few years, but they had sat in a cupboard for a long time before getting them into use in late 2024.

Ferrule Change Again

 I now have the next data point for my ferrule sequence!

I changed to new ferrules at the end of July, meaning these ferrules lasted some 4 months (from late March). On the shoe front, my shoes are still wearing in the same style, but slower. I estimate I'm at about 8 months down on these shoes. There are many variables in play with shoes (as noted here: https://hspjourney.blogspot.com/2024/10/symptoms-update-new-shoes.html)

NHS 10 Year Plan

The UK Government published its 10 year health plan last week. This is particularly relevant for those with disabilities and health conditions. Around 25% of the population have a disability, and this accounts for 65% of the NHS spend. Therefore, changes to the NHS have the greatest potential to affect those with disabilities and long-term health conditions. The plan highlights three main changes it seeks to implement:

• Moving services from hospitals more into the community
• Moving from analogue/paper to digital services
• Moving from treating illness to preventing illness.

It sees costs moving out of hospitals and into neighbourhoods, and a greater number of GPs using digital approaches. It wants the funding to reflect the needs of the population. Key elements for people with disabilities and long-term health conditions are:

• Having agreed care plans for those with complex health conditions
• Having Personal Health Budgets with individual control over how that is spent
• Being able to use the NHS app to directly book appointments with specialists
• A plan for continuous care for those with chronic conditions
• Allowing people to get more for their conditions from their pharmacy
• A focus on wearable technologies to assist with continuous care
• The NHS app will allow access by people with caring responsibilities  
• More emphasis on genomics to improve knowledge and diagnosis
• Recognition that insurers ‘compete’ to avoid covering those with complex situations
• Protection of benefits for those with the highest needs

More generally, I also spot:

• Greater access to many things through the NHS app
• Greater transparency in decision making through data on waiting times etc.
• Staff using AI more to assist in their work

Read more here:

https://www.england.nhs.uk/long-term-plan/

https://assets.publishing.service.gov.uk/media/6866387fe6557c544c74db7a/fit-for-the-future-10-year-health-plan-for-england.pdf

My other interesting item of the week was The Bottom Line on Radio 4 talking about care homes. Several people who work in the care home sector were chatting, and one summed up very nicely that their main role is listening to the stories of the people that they care for - and this is not something which a robot could ever do. It will be interesting to see how this sector plays out in the NHS changes.

https://www.bbc.co.uk/sounds/play/m002f9fj

Symptoms Update - Blood test results

Back at my appointment at the National Hospital for Neurology and Neurosurgery earlier in the year, one of the GP actions was a blood test to check my prostate. This has been done as both HSP and the prostate can affect urination, so a check on the prostate can rule out things which could be masked by my HSP.

I had a PSA (prostate-specific antigen) test to measure the PSA protein in my blood. The result came back at 1.1ng/ml, which is well below thresholds for concern.

There was also a range of other blood tests which came back in the right ranges, which is good to know about. 

Next up on the appointments front is my bladder, and I have an appointment for that in the middle of July. The bladder items are the last ones from that appointment (noting that my O/T appointment may take some time).

 

Symptoms Update - Dynamic Stretches Work Well

I realise May went past without a post - oops!

At the beginning of June I was following up on some of the actions from my HSP clinic appointment earlier in the year. That had recommended a programme for strength and balance. A conversation with my GP routed towards me booking my own appointment with the neurophysiotherapy team, with the appointment being very recently.

The first part of the appointment was reviewing where I got to having switched from passive stretching to dynamic stretching. The summary is clear - there has been positive progression in several areas!

• I am now able to stand on one foot, which I was not able to do before
• My walking speed has increased
• My fall risk has decreased

I note that the stretch change is broadly simultaneous with starting to use my walking poles, so there may be elements of both coming into play.

The conclusion was that I should carry on with those stretches!

Looking at the strength and balance side, the general observation is that my quads are becoming weak, and we added an additional dynamic stretch to work on the quads.

On the balance side, being able to stand on one foot is an improvement from where I was before. I also have a challenge added to the routine, where I am standing on one foot and then also getting my mind to do other things - for example moving my arms about or throwing and catching an object. This additional activity causes my brain to have to work harder, making maintaining the balance more difficult. I tried standing on one foot with my eyes closed, but that is not possible. I may well investigate if I can manage standing on one foot with my eyes closed over time.

The addition of these two stretches now pushes my daily stretch routine more firmly in the 25-30 minute zone, whereas it had been more in the 20-25 minute zone.

I am also getting appointments booked up for the other items on the list from the clinic visit. I am on the list for an occupational therapist visit at home, but as my needs are low at the moment, I am lower on the priority list, and that may well take several months to happen.

Symptoms Update - Muscle Weakness - Quads

When I went to the HSP clinic in London earlier in the year, one of the comments made was that my quadriceps were showing some weakness.

The quadriceps are the group of four muscles at the front of the top half of your leg. Their job is to flex the thigh and extend the knee, and are integral to walking. It has taken me a while to consider this piece of news! When I think about how my mobility is changing, it is quite obvious - quad weakness means I'm not lifting my leg as high when I walk, resulting in my toes not being raised as far, with consequential shoe wear as noted over several years. 

In my mind that particular weakness is the principal cause of my shoe wear. The walking poles that I'm using help me keep my posture more upright, allow my legs to swing through more easily, and take some of the balance function needed for walking, so are (to my mind) helping to offset the weakness in these muscles.

I also think about how it is sometimes more challenging for me to stand up from sitting, which is more frequently the case when I am on a lower seat, and the quads start from a more extended state. When I'm doing some moves when sitting down at Pilates I'm finding that I'm needing to hold onto my knees to give support to my lower back and posture. I also wonder if this weakness is part of my reason to want to sit down after a while. I'm also mentally going through other muscle groups and thinking if I perceive weakness in those.

Another part of that appointment was a handful of GP requests, and I have begun the process of getting an appointment to see my GP to begin to cover these.

Ferrule Change

It would seem that since I have been using my walking poles my shoes are getting worn out less quickly. There is another thing which is now wearing out quickly, and that is the ferrules on the end of my poles. It noticed this the other day when I had a load of sharp impact noises when putting my poles down on a hard floor in a reverberant space.

I looked at the bottom of my poles and spotted that the rubber had worn away so much that the metal tip was showing through. I had previously bought a bag of some 20-odd ferrules, and this marks the first change. I'm not sure quite when I started using the poles - some time around October 2024, so we can say that my first set of ferrules have lasted about six months. These ferrules are considerably cheaper than shoes!

As my mobility changes I can start to investigate whether other types of ferrule would give some advantages, but at the moment I have no need to change type. Here are a couple of photos.

Rare Disease Day

This is the first post on Rare Disease Day in a long time when I have not had a set of survey results to publish. I'll use this as an opportunity to get back to basics around this day.

Rare Disease Day 2025 – Raising awareness for people living with rare diseases and their families worldwide.

A rare disease is one which affects fewer than 1 in 2000 people, i.e. less than 0.05% of the population. All together there are over 7000 rare diseases, which reveals that 1 in 17 people are likely to be affected by rare disease at some point in their lives.

If your disability or health condition results from a rare disease, your journey through the healthcare system can much more challenging than with an 'everyday' disease. It can take many years to get a diagnosis. You keep having to explain your situation to successive healthcare professionals (who have 'never' heard of your condition before@). When both the affected person and healthcare professional have limited knowledge, the forward path can vary from indistinct to non-existent. The rarity of many of these conditions means that when treatment options are available, they can be limited or re-purposed from other conditions. Support can be hard to find. Advocating for yourself can be hard work.

There is a UK Rare Diseases framework which aims to resolve some of the issues faced by people around diagnosis and care. Several charities provide broad support for different types of rare disease. Work in Europe leads towards resources which can be used by people with rare conditions to help them have conversations with healthcare professionals. I add the link for the one for Hereditary Spastic Paraplegia.

UK Rare Diseases Framework - GOV.UK

Rare Disease UK - Genetic Alliance

Patient Journey Hereditary Spastic Paraplegias (HSPs) – ERN-RND | European Reference Network on Rare Neurological Diseases

 

  

2024 Blog Data and Health Review

This is now my third post with an update of the blog and my heath data. Things have taken a little longer than last year, but I am there now. 

In terms of the blog update, I've updated the four pages as follows:

• Index - easy!
• Survey summary (my on-line research page) - this is still to do....

Blog statistics

This data has been updated, but I havent really paid much attention to it this year. The more popular posts follow the general pattern. It feels like I've had less energy for blogging in 2024 than previously, and my posts are generally up in the last days of the month. There were more symptoms updates and general posts, and less meetings and research posts. This reflects my general activities. 

• In 2024 I didnt run a survey. I reviewed the findings of the 10 surveys that I had previously done. There are issues with my e-mail service not permitting me to send e-mails with the number of contacts that I have, and I havent worked a solution out for this for any future surveys. This has likely generated less traffic to the blog. 
• I am posting less about posts on X an FaceBook. 
• The comments made about my mental health last year about 2023 also hold true for 2024, with possible influence on my writing style.

Health data (Symptoms timeline page)

The health data for 2024 shows a few interesting patterns:

• My weight is slightly down on 2023
• My alcohol level is similar to 2023
• My sleep duration is similar to 2023 
• The number of active minutes is similar to 2023
• My total number of steps is similar to 2023

I think this means that I'm now in my new normal. 2024 is generally similar to 2023, which was different from 2022 and earlier years. I have similar aspirations for 2025 - seeking to get my weight down and improve my cardiovascular health. In summary I need to keep up the exercise and pay more attention to what I'm eating and drinking.

There has been a big change on the mobility aids in 2024, I started using walking poles. My Physio changed my stretches from passive to active stretches. I will be keeping an eye out to see if this affects my shoe wear. My Neurologist was clear that I am starting to lose strength in some muscles, and I think this might be starting to show up in balance as well.

Back to Pilates, as I said last year, I'm having to improvise a few adaptions during classes for some movements. I am now more comfortable having a chair/wall/table near where I'm doing my Pilates to allow me to keep my balance more. The light touch on something else with my hand means I can focus on the movement that we're working on, and not also having to focus on my muscle weakness and balance.

Last year I said about considering myself as a disabled person. In my mind the poles and the blue badge make things much more apparent to onlookers, but I realise that I've had a distinctive gait for a few years. 

Clinic Visit

Today I went to the National Hospital in London for my annual check-up.

My previous check-up was in 2023, but my original appointment in late 2024 had to be re-scheduled till early 2025. This was my first in person appointment since Covid. It was good to back in person, even if the location of the check-in had changed within the hospital!

I saw a new member of the team, so the first part of the consultation was a review of where I am, my family history and that kind of thing. Whilst this is information which I'm frequently having to say each time I meet a new healthcare professional, it is good to reflect on it with a new perspective. The observation this time is around talking about this to my kids, noting that even if they do have HSP they've another decade or two before anything happens. I think this is a conversation I need to have with them in  the relatively near future though.

We concluded that there was nothing unusual about my symptoms, and everything appears to be in order. We reviewed my medication, and there are no changes to be made at the moment. On the mobility front, I'm being recommended to get some some strength and balance exercises, and to generally try and keep myself healthy. I have reasonable strength in my muscles, although there are some which are beginning to get a bit weaker. For example my hamstrings are strong, but my quadriceps are a bit weak. The strength and balance exercises are likely to come from a neurophysiotherapist.

On the bladder front I noted that I'm finding the need to go to the loo more often, and we're going to try and get a local (to me) appointment with a neurourology clinic to find out more about what is going on. There is a balance to be struck with the medication, as I noted that since starting to take the bladder medication my bowel issues had become substantially smaller.

Other key points to note are to focus on my ankle muscles, and to cut down my alcohol. She notes that alcohol can reduce the intake of vitamin B1, which can help keep the nervous system healthy. This is an interesting idea, and I have checked that my current multi-vitamin includes vitamin B1. This led to another interesting point, in that too much vitamin B6 can cause neuropathy. This indicates that there is a bit of an overlap between HSP's effects on the nerves and effects from other issues. My multi-vitamin also contains B6.

I had seen some pages a few years ago about dietary supplements, with some people with HSP claiming some benefits from these. I might have to investigate more this one day......  

Symptoms update - review of walking poles

I have now been using my poles for a few months, so its time to reflect on the changes. 

From a practicality point of view, I think that the wear on my shoes is less, so that indicates that my walking posture is better. Of course, in the same timeframe I've also changed my stretching routine, so that may be another factor in walking. I think that my walking style is better irrespective of the rate of shoe wear. 

I feel that I've a bit more headspace to think about my posture and the way that I'm lifting and moving my legs whilst I am walking. I dont think I was able to do that before, so the poles are making a difference. I perceive the difference to be mostly down to balance, where I have a few more milliseconds to think instead of feeling I have to get my feet on the ground as quickly as possible. 

From a broader perspective, my slower pace is more visible to others, and I'm finding that people are giving me more space and time to be able to do things. I accept that this change makes it more obvious that I have a disability, and appearing on the other side of the Yes/No binary answer to the "are you disabled?" question, which is something I'm having to come to terms with. 

There are a few other things that are different with using poles. As I have one in each hand, I've had to change the types of bag that I use. Whereas I used to carry bags in my hand, I'm now using a rucksack for most things. This is very useful whilst I'm mobile, but there is more hassle getting things in or out of my bag as I have to stop, take the bag off, etc. etc. which is another slower pace of life item. I have bought a little clamp which allows me to use a pole as a selfie-stick, which is neat. My current look-out is for a little holder I can clamp onto a table etc. so I dont have to pay attention to watching if my poles are going to fall to the floor whilst I'm sat down. I'll update with my findings. 

When using stairs, I'm able to hold both poles in one hand, and use the other hand for the hand-rail. This trick is also used when I'm wanting to use one hand for something whilst out and about. For two-handed activities - like taking a photo, I'm using the straps on the poles to give me use of both hands.