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.