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.