Useful web page - A to Z from an MS perspective

Hello all,

The end of the month is fast approaching, which means that its just for me to slide in a short post for my second September post. Those who like to look forward can note that the two October posts should be the write up of the 3rd AGM presentation from the UK support group, and the launch of my 2021 HSP survey. Unfortunately neither of these are quite ready today!

So, here are details of a very useful resource from the Multiple Sclerosis Trust. This is a similar group to the HSP support group, finding information and providing support to people with MS in the UK.

They have prepared an A to Z of things relevant to MS: https://mstrust.org.uk/a-z. The list contains details of treatments, symptoms and common terms. MS is one of the conditions which is often misdiagnosed on peoples journey to HSP, and there is a good overlap in symptoms between HSP and MS.

So, with the caveat that the advice may not be completely relevant, you can look up the more common treatments used for HSP (Baclofen, Botox, Tizanidine, Gabapentin, etc. etc.) and you can find out where the treatment comes from, what it does and doesn't do. Remember the What does XXXX do for MS may not be the same as what it would do for HSP.

There are descriptions of the MS symptoms like Walking Difficulties, Fatigue, Pain, Bladder/Bowel problems (and so on) and you can get an overview of these. As noted, there is a large overlap of symptoms between MS and HSP, but there are also some differences.

Overall, there is a lot to look at. Being a UK organisation the details on benefits and accessing specialist services are from a UK perspective.

Enjoy browsing!

    

Hereditary Spastic Paralympians!

Please excuse the play on words in the title of this post - I suspect it wont translate well into other languages!

Readers may have noticed that the Paralympics followed after the Olympics, and I knew that there were a few people with HSP who were taking part. This post notes who they are and how they did.

Overall Team HSP has 8 athletes from 7 countries, who in total got 2 Gold medals, 2 Silver medals and 3 Bronze medals. I note that I didnt find out about one of these athletes until after the Games had finished.

Congratulations to all!

Evan Austin

Evan Austin (Team USA) won two medals, a Gold in 50m mens S7 butterfly and a Bronze in 400m mens S7 freestyle. Evan also competed in the finals for the SM7 200m individual medley and the Mens 34 point 100m freestyle relay, and also the 34 point 100m medley relay.

You can read Evans details here: https://www.teamusa.org/usparaswimming/athletes/Evan-Austin and https://www.paralympic.org/evan-austin - his Twitter bio reads: "Professional swimmer and speaker. Massive sports fan. My legs aren’t great but I work with what I got. Born with limits, living without them. Let it ride." 

You can follow: https://twitter.com/E_A_swim and https://www.instagram.com/e_a_swim/ 

Roman Polianskyi

Roman Polianskyi (Team Ukraine) won Gold in the PR1 mens single sculls, setting a new Paralympic record along the way.

You can read Romans details here: https://www.paralympic.org/roman-polianskyi and here https://en.wikidat.com/info/roman-polianskyi. Roman switched from para-canoe to para-rowing. 

I've not been able to find Roman on social media.

Toni Ponce

Toni Ponce (Team Spain) won 2 Silver medals in the pool, in the 200m S5 freestyle and the 100m S5 breaststroke. He also competed in the finals for the S5 100m freestyle, S5 50m backstroke and the 20 point 4*50m freestyle relay, and in the S5 50m freestyle.

You can read Toni's details here: https://www.paralympic.org/antoni-ponce-bertran 

You can follow: https://twitter.com/tponce87 and https://www.instagram.com/toni_ponce/

Rebecca Hart

Rebecca Hart (Team USA) won Bronze in the Equestrian Team Test to Music. She also competed in the Grade III individual test.

You can read Rebeccas details here: https://www.teamusa.org/para-equestrian/athletes/rebecca-hart and https://www.usef.org/team-usa/athletes/rebecca_hart. Rebecca has written to the UK Support Group: https://hspgroup.org/wp-content/uploads/2020/05/045-Sept-2018.pdf

You can follow: https://www.facebook.com/RebeccaHart136/ or https://www.youtube.com/results?search_query=rebecca+hart+para+equestrian

Laila Suzigan Abate

Laila (Team Brazil) won Bronze in the 20point 4*50m freestyle relay. She also competed in the S6 400m freestyle final and the S7 100m freestyle and S6 50m freestyle.

You can read Lailas details here: https://www.paralympic.org/laila-suzigan-garcia 

You can follow: https://www.instagram.com/lailasuzigan/ or https://www.facebook.com/lailasuziganoficial

Ian Marsden

Ian (Team GB) competed in the final for the Men's KL1 200m Single Kayak.

You can read Ians details here: https://paralympics.org.uk/athletes/ian-marsden and https://ianmarsden.com/. Ian used to compete in power lifting (holding 3 world records) and switched to para canoe.

You can follow: https://twitter.com/IanMarsdenGB or https://www.instagram.com/ianmarsdengb/

Hallie Smith

Hallie (Team USA) competed in the final for the Women's PR1 Single Sculls.

You can read Hallies details here: https://www.teamusa.org/us-rowing/athletes/Hallie-Smith Her Twitter bio says: "Team USA Paralympian 2020ne. Coach, athlete, and advocate. Hereditary spastic paraplegia, so my legs are for aesthetic purposes only"

You can follow: https://twitter.com/smithonwheels or https://www.instagram.com/smithonwheels/ or https://www.facebook.com/HallieSmithParaRower/

Austin Smeenk

Austin (Team Canada) competed in the finals for the T34 100m and 800m. 

You can read Austins details here: https://paralympic.ca/team-canada/austin-smeenk and https://www.paralympic.org/austin-smeenk

You can follow: https://twitter.com/austin_smeenk or https://www.instagram.com/austinsmeenk/