Symptoms Update - Physio and Orthotics

In the last month I've been to see both my Neurophysiotherapist and my Orthotics team.

Orthotics

I decided to re-visit orthotics as someone observed that I'd had my insoles for a long time. I went to see the team and had new moulds made of my feet. A new pair of insoles was ready a couple of weeks later, and these are working well. I'm not spotting any difference from the previous ones. I have ordered a second set for my other pair of shoes.

It seems that I fall off the list if I dont see anyone for 2 years, so I'm planning to book an appointment within that time to keep insole replacement on a regular timing.

Whilst I was there we also talked about other aspects. I now have a second night splint, which makes it easier to commit to wearing these as I can wear both at the same time. Doing this allows me to sit working at home with both splits on, and get some additional muscle stretches.

I mentioned this to my neurophysiotherapist, who advised that to get the splits to stretch my calf muscles I'd need to get my knee straight. I havent yet worked out how to do this.

We also talked about my AFO. I havent been wearing that much, because it has been time consuming to take it on and off in conjunction with my insoles. I now have a couple of ankle supports which are cloth (and flexible). I'm wearing these for a few hours most days, and I will evaluate if I am noticing a change.

Neurophysiotherapy

Similarly to visiting the orthotics team, I also went to physiotherapy to review my stretching routine. There are big changes here. I am no longer doing the passive stretches that I was given. I now do a series of active stretches which also target balance and movement. I will get a set of pictures up for these over time.

I am noticing a difference with these new stretches, in that my balance is improving, and I am finding it easier to stand from sitting.

We also talked about mobility aids, and I've now started using walking poles. I think these are helping me. They are mostly there for balance, but they also allow me to concentrate on getting my heel down first when I walk. This was the biggest take-away from the physio - when walking make sure my heel strikes the ground first.

This is OK, but it also balances against speed of walking, so I have to concentrate on doing this. Further updates another time!

 

2024 AGM - HSP diagnosis and treatment

One of the presentations associated with the UK HSP Support Group AGM was Estelle Marshall presenting the results of her Masters dissertation with us, around HSP Diagnosis and Treatment.

Estelle began by introducing her background, noting that she has her own diagnosis if HSP, and that until very recently she was a trained physiotherapist. These two aspects had led her to completing her Masters dissertation covering HSP, its diagnosis and treatment. She had interviewed around 100 members of the support group to gather their thoughts, of which she interviewed nine people.

Her study aimed to find ways to improve the diagnosis pathway, looking at the information that people are given upon their diagnosis, and also to look at which exercises that people regularly do to manage their HSP.

On the diagnosis pathway, it is long for many people, with misdiagnosis being common. Only 16% of people had prior awareness of HSP, leaving most people being diagnosed with a condition that they have never heard of before, and consequently do not know anything about.

The impacts of getting the diagnosis were variable. Several people expressed relief about getting to the end of the diagnosis pathway. Many experience grief or bereavement about the loss of aspects of their future selves. The diagnosis helped some people plan for their future. Diagnosis impacted may areas of peoples lives, including their relationships, their jobs/careers, and their everyday lives. 

About a quarter of people received no information about HSP on their diagnosis, and just over half were given a description of what HSP is. Information given included modes of inheritance, symptom progression/variation, and symptom management. Symptom management information was given to about a quarter of people.

Estelle asked one question about the support group - if people were told about the group as part of the information they received at diagnosis. About a quarter were, and about three quarters were not. However, the positive impact of the support group was mentioned many times by lots of respondents in their answers to other questions.  

In overall terms, many people talked about exercise being the most important thing to manage HSP. Exercise includes physiotherapy, stretching and keeping active. Another item is making use of mobility aids before you need them, so that you're able to use them before you must. Several people find being in control of their own destiny can be powerful. Others find that counselling/therapy is beneficial.

Looking at physiotherapy, physiotherapists can educate people about HSP, give advice on walking aids, and give advice on exercises that are useful. They can also advise on fall prevention. The top three pieces of physiotherapist advice that people found most useful are: Stretching activities, advice on mobility aids and balance training. Several people had difficulties getting access to physiotherapists. 

Broadly, exercise is key to management of HSP symptoms, with some reporting feeling more stiff when they don't exercise. Stretching takes the number one spot for being useful. For other exercises, the importance is more around finding something which you enjoy doing. Different people were doing different things, with people doing things like yoga and pilates, or swimming, weights and many other things. Exercise as a group or class can increase the likelihood of keeping it regular, and there are benefits from the social aspects. Exercise can also improve peoples quality of life and mental health.

For stretches, Estelle outlined approaches for stretching calf muscles, hip muscles and backs. She notes that stretches can be done whilst sitting or lying, there is no need to have to get into a specific position or use a mat.

Barriers to exercise included capability (physical limitations, reduced confidence), opportunity (time pressures, access restrictions, and reduced energy), or motivation (pain, opinions about exercise, convenience or emotions). 

These aspects can lead towards people leading productive independent lives. This can be important when, for example, people have had to give up their work dur to HSP. Many with HSP are keen to carry on contributing to society, and choose not to define themselves in the context of their HSP. 

You can watch this presentation here: https://www.youtube.com/watch?v=f-hobnlRk3w