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.