Wednesday 30 October 2024

Symptoms Update - New Shoes!

Just a brief post today.

I have just started wearing another new pair of shoes. This means that the ones I got to replace the previous set have only lasted a few months.


The pleasing aspect is that the wear pattern has returned to normal, which suggests that the complete failure of the previous pair was to do with moving house and the extra stresses resulting from that. There is no sign of wear on the tops of the shoes.

The disappointing aspect is that these have lasted for 4-5 months which makes them my quickest pair to date. However, I am also on the cusp of starting to use walking poles, I have new insoles on order, and my stretches are changing, which will be the subject of more blog posts soon! I wonder if any of these will help change the rate of wear of my shoes.

I was briefly reading my recent shoe replacement posts, and I noted that I had switched type at the end of 2023 because of price. This time I have taken the bullet and gone back to Karrimor shoes, and I was lucky to find a reasonable price for these on purchase. My new shoes are Karrimor Mount, which are low walking shoes. 

Taking the start point of these new shoes as the beginning of November, this adds to the dataset, showing the number of months between new shoes decreasing each time.

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



Friday 25 October 2024

Prevalence of HSP in England and Northern Ireland

One of the presentations after the 2024 UK HSP Support Group AGM covered the epidemiology and prevalence of HSP in England and Northern Ireland, focussing on mental health outcomes. This was presented by Harini Jeyakumar, who completed the study for her dissertation for her Masters in Public Health.

She used a dataset containing anonymous GP data from England and Norther Ireland covering the period 2000 to 2021. She used the dataset to identify people who have a diagnosis of HSP, but the dataset does not include any genetic data.

To compare the health effects of people with HSP she created a control group of people who did not have HSP, but who were otherwise matched for age, gender and location. The dataset is growing as data is added, and at December 2023 covers 24% of the population.

The overall dataset used contains 31.3 million people, and from this there are 1455 cases of HSP. This gives an overall prevalence of 4.65 people per 100,000 having HSP. There were slightly more males (58%) than females (42%) in the group, with most being middle-aged or older.

Although there were 27% without ethnicity data, most (65%) were white, with the next biggest group being Asian (6%). Geographically, people were spread fairly evenly across England, with slightly more in the South East and North West of England. Less than 1% of the people were from Northern Ireland. In terms of deprivation, the distribution was fairly even, although there were slightly more people in the higher levels of deprivation.

Harini had looked at the change in prevalence over time, in 2000 the prevalence of HSP was 2.83 per 100,000, which rose steadily over time to 6.27 per 100,000 in 2021. At the beginning of her presentation Harini had put the results of other studies up for comparison, ranging from Norway at 7.4 per 100,000 to Ireland at 1.3 per 100,000.

The mental health outcomes were also interesting. The dataset allowed pre-existing health conditions to be examined. For depression, 19% had a pre-existing diagnosis, compared with 12% of the control group. For anxiety, 12% had a pre-existing diagnosis, compared with 9% of the control group. This means that people with HSP are 74% more likely to have depression and 31% more likely to have anxiety, compared with people who do not have HSP. 

Crunching the numbers through shows that people with HSP are 57% more likely to develop depression and 41% more likely to develop anxiety. People in the more deprived areas are also more likely to develop these, as are females. Those with Asian ethnicity are less likely to develop these than people who are white, although this was a small dataset. There were a lot of interesting questions and discussion after this.

You can watch this here: https://www.youtube.com/watch?v=ARMtXWg0EOE

Regular readers will note that I have previously looked at published studies on the prevalence of HSP, back in 2011! https://hspjourney.blogspot.com/2011/08/hsp-prevalence.html. I had looked at European studies and obtained a prevalence of 2.91 per 100,000. Noting the change over time, these studies are from the period 1982 to 2009, with most in the 1990's. The prevalence Harini notes for 2000 is very similar to this at 2.81 per 100,000.

It is interesting to consider why the prevalence rate changes over time. Certainly the number of types of HSP has increased over time, and the number that are available in genetic test panels has also increased. Also, the cost of genetic testing has come down, and the availability is higher. However, there is still a diagnosis gap, with many getting a clinical diagnosis instead of a genetic one. I speculate that the awareness of HSP is increasing over time, but I also appreciate that I have a very biased view on this!

Taking the 4.65 value, with a UK population of 68.3 million, there should be some 3200 people with HSP in the UK. Allowing for the 30-40% diagnosis gap that might put the number more into the 4000's. I used this logic in 2020 in an earlier estimate: https://hspjourney.blogspot.com/2020/01/update-to-prevalence-with-hsp-in-uk.html

I was surprised that there were so few people with HSP in Northern Ireland. The population of Northern Ireland is about 3% of the population of England and Northern Ireland, and there were less than 1% of the people with HSP in Northern Ireland.

There is certainly some food for thought in this data when I wear my Support Group hat - principally:

  • We ought to have a rising membership to match the rising prevalence.
  • Are we known in the more deprived parts of the UK to pick up the higher mental health risks.
  • Does our gender split match these findings, or are we missing a group of people.
  • Do we have enough ethnicity data to explore if we are also missing out on groups of people.



Wednesday 25 September 2024

HSP on Podcasts

HSP features in two different podcasts, which you might be interested in listening to. Both are episodes of the Rare on Air series, created by Eurordis.

This link takes you to the podcast page: https://www.eurordis.org/rare-on-air/

The page will open episodes in Spotify, but you can also subscribe to this and listen through other podcast providers.

The two episodes are:

Putting Patient Journeys into Action, from 12th September.

In this episode Lori Renna Linton talks about the HSP patient journey which she and I put together, synthesising the results of my surveys over time into a practical document to help people with HSP be able to highlight key issues in conversations with healthcare professionals.

https://open.spotify.com/episode/3z8u7BTx9HW2qvTN2rO7ZF?go=1&sp_cid=f4723d1b26e521993d54a2845332ea08&utm_source=embed_player_p&utm_medium=desktop

Marina Zapparoli Manzoni on the power of finding and building a community, from 27th June.

In this episode Marina (chair of EuroHSP) talks about her families journey with HSP, and how it has moved her to advocate for HSP through EuroHSP and the various national HSP groups. The voice from these groups helps move researchers towards improving their understanding of HSP and exploring treatment and support options that are useful for people who have HSP.  


If you prefer to access these in a different way you can also access through YouTube:



Sunday 22 September 2024

More on Paralympics

 After the Paralympics finished I had worked out the number of medals for all of the people with HSP competing in the Olympics. I also put a photo together with all of the wonderful people with HSP who were competing:


Since this I have become aware of another person with HSP who was competing - Daniel Mendes was competing for Brazil in the swimming, and won a Bronze in the mixed 4*50m freestyle relay.

This brings the medal tally up by one to:

Gold - 3 (All from Rebecca Hart in the equestrian)
Silver  - 2 (from Roman Polianskyi in the rowing and Toni Ponce in the swimming)
Bronze - 3 (from Austin Smeenk in the athletics, Dayna Crees in the javelin and Daniel Mendes in the swimming).

If Team HSP were a country then it would feature between Greece and Venezuela, but the addition of another Bronze doesnt change this because Greece have 3 silver and 7 bronze medals.

If anyone knows other people with HSP who were competing in the Paralympics, please let me know, and I can make an updated picture to include Daniel (and any others).


Here is Daniel with his team at their medal ceremony:



Tuesday 27 August 2024

UK HSP Support Group AGM - Can you help?

At the weekend, wearing my 'chair' hat, I hosted the 5th digital AGM of the UK HSP Support Group. 

We had around 30 members attending, and covered all the usual matters. However, there was one important difference. The support group needs people to come forwards to be trustees. We specifically need one person to come forward and be our treasurer, and another person to come forward and be our secretary. Without new trustees we have have to close the charity.

People do not have to have HSP to help us, we need two things:

  • A passion to be able to help
  • Dedication to fulfil the responsibilities of the role.

If this sounds like you and you want to help, or if this sounds like someone you know please get in touch. You can leave a comment here, or contact the group by e-mail, post, telephone or through our social media channels.

You can watch all the AGM on our YouTube channel - https://www.youtube.com/watch?v=UZMv2pLRJ7M




Thursday 22 August 2024

Hereditary Spastic Paralympians 2024

 As we are coming up to the Paris 2024 Paralympics, I have had a quick look to see if I can find athletes who have HSP.

I started by looking at my post from the Tokyo Paralympics, and pleased to find that all but one of the athletes from there are also appearing in Paris. I have also done a search and found other athletes with HSP who are appearing.

I am busy preparing for the UK HSP Support Group AGM, which is on Saturday. So, this post is a quick list of the people I have found. Most of these athletes seem to have active instagram pages, so that has been my social media link of choice to put here.

Evan Austin (USA) https://www.instagram.com/e_a_swim/ 

Rebecca Hart (USA) https://www.instagram.com/rebeccahart136/ 

Katie Morrow (GB) https://x.com/katiemorrow56 

Jade Atkin (GB) https://www.instagram.com/jadeatkin10/

Roman Polianskyi (Ukraine) https://www.instagram.com/roman_alexandrovi/

Toni Ponce (Spain) https://www.instagram.com/toni_ponce/ 

Laila Suzigan (Brazil) https://www.instagram.com/lailasuzigan/ 

Daniel Mendes (Brazil) https://www.instagram.com/danielmendess6_/

Austin Smeenk (Canada) https://www.instagram.com/austinsmeenk/ 

Dayna Crees (Australia) https://www.instagram.com/daynacrees__/ 

Arianna Talamona (Italy) https://www.instagram.com/talamona94  

Milena Surreau (France) https://www.instagram.com/milena_surreau/ 

Lisa Bergenthal (Germany) https://www.instagram.com/lisa.bthal

Michael Volter (Germany) https://www.instagram.com/michvolt10/

If anyone knows other athletes with HSP in the Paralympics, please let me know!!!

(25th August - Merci to friends in France saying about Milena.)
(30th August - Thanks to friends in UK for saying about Jade, and Danke to friends in Germany for saying about Lisa and Michael)
(1st September - review of schedules shows that Hallie Smith isnt competing this year)
(22nd September - Thanks to friends in Brazil for saying about Daniel Mendes)



Tuesday 30 July 2024

UK HSP Support Group AGM Preparations

I'm not quite clear how the end of the month has arrived so quickly! In the last couple of weeks I have been fairly busy getting the first batch of preparations ready for the AGM of the UK HSP Support Group.

This year has been a little different from recent years because of some role changes. I have had a much more hands on involvement with getting the documentation ready for our postal voters. There is a relatively small proportion of our members who do not have an e-mail address, and who have elected to vote at our AGM via post. One of my tasks has been printing, folding and sending these documents out, including the stamped addressed envelope allowing people to return their postal votes.

In the usual activities I've been editing and finalising our trustees report for the year, along with getting the other documentation together which our members vote on. These have been uploaded to our website, so anyone reading this ought be able to see them - here: https://hspgroup.org/annual-general-meeting/.

The last step in this process has been to write our covering e-mail, ask for these to be e-mailed our to all members with e-mail addresses, and advertise the details on our website and social media channels, here: https://hspgroup.org/agm-details-24th-august/. I might as well use this as another place to let people know - our AGM will be on Saturday 24th August at 10:30 (UK time) using the Zoom platform. 

Next on my AGM agenda is working out what I'm going to say during the AGM and talking with people who can share their knowledge or experience with our members in the late summer or early autumn. If any readers have things which they feel would be useful for the group to hear about, please drop me a line.


Thursday 25 July 2024

Symptoms Update - Posture and Balance

I realised (via some conversations) that my walking style has progressed to me looking down at my feet whilst I'm walking. This is not very good for my posture! I am now focussing on walking looking forward and trying to keep my posture more upright.

There are two consequences of this:

  • I'm having to rely on my proprioception to ensure that my feet are picked up high enough so they clear obstacles and don't drag on the ground. I'm having to put a bit more conscious effort into walking so my legs are doing what I ask them. (instead of using visual feedback in a more automatic way)
  • The change is making the muscles in my torso feel different, and I'm hoping that this is just a temporary thing whilst my body gets used to a new way of standing and walking.


On the balance front, I'm becoming more conscious that in addition to using banisters for going up and down stairs, I'm also using my hands on other things whilst walking on the level. It is likely that my balance is on the change a little, and my need to use other things for support is a reflection of this. 

A much more obvious example of changes in my balance is during Pilates. Each week I'm positioning a chair next to my mat so that I can steady myself when any standing activities require balance. This is principally whenever we're lifting one foot off the floor. My balance still seems reasonable when both feet are in contact with the ground. I'm not really needing to grab the back of the chair, its just a question of putting my hand to rest on the back of the chair.


 

Wednesday 19 June 2024

UK General Election 2024

The table below summarises key points with the potential to affect people with disabilities and health conditions. My summary is: 

  • Voting for Liberal Democrat, Green or Plaid Cymru has better outcomes.
  • Labour seems to have small positive movement. 
  • Scottish National Party appears to be fairly neutral
  • Conservative are seeking to reform disability benefits, with otherwise small positive movement.
  • Reform UK seem to have mostly negative outcomes.  

Party

Positive highlights

Negatives

Others

Liberal Democrat

·         Health: More GPs. Support for long term health conditions. Access to new medications.

·         Benefits: Reform PIP to stop reassessments. Increase statutory sick pay.

·         Care: Free personal care. Paid carers leave. Higher carer allowance.

·         Transport: Improve accessibility at stations and blue badges.

·         Rights: Disability pay gap reporting. Several improvements to rights.

·         Education: More SEND funding. Free BSL lessons.

Nothing on housing.

 

Braille manifesto. Other formats soon.

Green

·         Health: Reduce waiting lists. Better diagnostics. Cancer plan.

·         Benefits: All disability benefits +5%. End benefit sanctions.

·         Care: Free personal care. Higher carer allowance.

·         Transport: Make public transport accessible. 20mph speed limits.

·         Rights: Protection for disability pay gap. Additional support in employment.

·         Housing: Right for inclusive housing. Cater for disabilities in social housing.

·         Education: Fully inclusive and accessible schools, more SEND funding.

No negatives of note.

No other manifesto formats.

Labour

·         Health: Reduce waiting lists. More GPs & Nurses. Routes to specialists. Reduce health inequalities.

·         Benefits: Improve employment support for those with disabilities & reasonable adjustments.

·         Care: Create National Care Service. Explore better support.

·         Transport: Ensure rail accessibility.

·         Rights: Equal pay right for disabled. Disability pay gap reporting.

·         Education: Improve inclusivity. Change SEND decisions.

Nothing on housing.

Manifesto includes ableist language.

Other manifesto formats soon.

Conservative

·         Health: NHS spending above inflation. More GPs and Nurses. Community diagnostics. Remove barriers to new treatments. Research support. Other support plans.

·         Benefits: Simpler and fairer process for those affected by severe conditions.

·         Care: Stand behind carers. Cap social care costs.

·         Transport: Improve accessibility at 100 stations. Potential ban on pavement parking.

·         Rights: Deliver disability action plan. Make UK accessible.

·         Housing: Encourage different forms of housing.

·         Education: 60,000 more SEND places.

Not clear if reforms to PIP and disability benefits are positive or negative, but seeking fewer claimants.

No other manifesto formats.

Reform UK

·         Health: Target zero waiting lists.

·         Benefits: Exemption on reassessment for serious disabilities.

Change Equality Act. Scrap DE&I rules. Face-to-face PIP/WCA meets.

Nothing on Care, Transport, Housing or Education.

No other manifesto formats.

Plaid Cymru

·         Health: More GPs. Support for pharmacies. Community diagnostics. Plans and support for various health conditions.

·         Benefits: Oppose WCA changes, Increase statutory sick pay.

·         Care: National Care Service for Wales, free at point of use.

·         Rights: Incorporate UN Rights of Persons with Disabilities into UK law.

Nothing on Transport, Housing or Education.

Several formats for manifestos.

Scottish National Party

·         Health: Boost NHS funding. Reduce waiting times.

·         Benefits: Improve statutory sick pay. Scrap negative welfare reforms for disabled and carers.

·         Care: Reverse moves to stop overseas care workers.

Nothing on Transport, Rights, Housing or Education.

Large print manifesto. Other  formats soon.


I apologise for the inability of Blogger to accept a table with formatting!

Please note that this table has been pulled together from a fairly quick read of these seven manifestos. I may well have missed some points, and there is potential for me to have misunderstood some things on a quick read.

However - this may make you think about the upcoming election in a different way!!

Sunday 16 June 2024

New Shoes

So, its half way through 2024 and the new shoes that I got at the end of 2023 have gone!


This photo shows that the soles have started to fall to bits, with my left shoe doing most the work. Both shoes failed on the same day, during my recent house move, and with the soles flapping about they are no use. So, my conclusion is that the half price which I spent at the end of 2023 has lasted half as long! Looking at the wear pattern it starts to follow the same pattern as other shoes:


As this looks at the soles my left shoe is on the right, and the wear here is bigger than on the right shoe.

To test if it was the hard work of house moving I have bought another pair of the same shoes again, and we'll see how long they last, and if they die quickly I may revert back to the Karrimor Supa's next time.

I also have a set of pictures showing the wear on my Karrimor shoes through 2023: