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.  

https://podcasters.spotify.com/pod/show/eurordis/episodes/Marina-Zapparoli-Manzoni-on-the-power-of-finding-and-building-a-community-e2lc8f4

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

https://www.youtube.com/playlist?list=PLAxshsSSDfaC7T0wABZeRcaOYZELtBfsV

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).

The full list of athletes I found is here: https://hspjourney.blogspot.com/2024/08/hereditary-spastic-paralympians-2024.html

Here is Daniel with his team at their medal ceremony:

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

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)

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.

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.

 

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!!

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:

How to be an ally!

Another quick post today. In recent months I've been having conversations with quite a few people who are starting their journey being allies for disability. The conversations usually have a similar starting point:

Them: I'm scared of saying the wrong thing.

Me: Dont choose to say nothing, that silence is deafening for people with disabilities

In reality, there are so many different perspectives on disability which are rooted in peoples experiences, that it is impossible to say something which is accepted by everyone. People with disabilities and health conditions have their own preferences for how things are expressed, and their individual views on what needs to be changed first to make things better.

It is only in the last couple of weeks that I've realised that allies also have this challenge, and they have the additional journey of talking about a topic which doesnt affect them directly. I think that they have a challenge being comfortable talking about disability. Without first hand experiences, they have to work out how to express views, which aspects they bring to the fore conversations, and how they articulate the experiences of others. Three avenues are:

• Knowing someone with a disability or health condition can really help an ally, as they are able to learn by discussion and observation with that person. 
• Being aware of what is going on in the wider world, and an awareness of how disability is being covered in the news is useful. Talking about these topics makes disability part of normal conversation.
• It should be straightforward to call out discriminatory or ableist behaviour/language, and that is another way of expressing frequently experienced societal barriers. (examples - call people out when they talk about "the blind leading the blind", "falling on deaf ears", and "lame ideas").

Activities for the year

A short post for today! Now that I've had my birthday and I'm officially in my 50's, and now that I've moved house, it feels like I can begin to deal with a short list of important things which have been hiding in the wings for a while. I'm listing them here as an aide memoir, and to let others know about my thought processes.

• Apply for a blue badge - my walking speed is getting slow, and it is time to make my first application for a blue badge and engage with my local authority in a new way.
• Re-visit the neuro-physiotherapist. It has been a while since I last saw the neuro-physio, and it feel right to review my stretching routine and make sure that I'm doing all the relevant ones with my gradually changing gait.
• Re-visit the orthotics team. A conversation with someone about my insoles caused surprise that I've had the same insoles for about a decade. These ones are getting a bit worn, and it may be that my altered gait means that having new ones might make another small difference.

You might be asking why being in my 50's is a factor - its just a self-imposed mental block. I'm expecting plenty of change in the next few years with the beginnings of needing to use more obvious mobility aids. I can draw a neat chapter close for HSP in my 40's quite nicely.