Sunday 31 January 2021

Rare Disease Videos on TED

I have been exploring videos about HSP on YouTube for the UK HSP Support Group, principally to be able to add videos made by/about anyone with HSP to their "Those with HSP" playlist. https://www.youtube.com/channel/UCkxTfcI4tKYNMYsgzVumpWA/playlists

I also had a brief look at TED to see if there were any relevant videos as well. I didnt find any with/about HSP, but there are a few interesting ones about rare diseases. These all have parallels with the HSP world - enjoy watching!

Sharon Terry had two young children who were diagnosed with a rare disease known as pseudoxanthoma elasticum (PXE). Sharon explains how she and her husband became citizen scientists, working to find the gene behind PXE and establishing mandates for researchers to share biological samples and work together.

Jennifer Brea became progressively ill with myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome. Jennifer describes the obstacles she's encountered in getting diagnosis and seeking treatment for her condition with root causes and physical effects which are not understood, and her mission to document the lives of patients that medicine struggles to treat.

Georgia Hay tells the story of Lily, who suffers from a chronic rare disease. Georgia talks about her diagnosis journey and the more general diagnosis journey for those with rare diseases, and speculates how work in rare disease diagnosis may map out the future of work for teams and organisations allowing people to work effectively alongside technology.

Sue Austin talks about the tremendous sense of freedom she got from starting to use a power wheelchair, and the artwork she has made to challenge preconceptions of wheelchair use. She conveys the spirit of wonder she feels wheeling through the world and underwater, and the freedom of thought from seeing something so unusual!

You can also read more about Sue here:



Sunday 17 January 2021

Which physiotherapy helps with HSP

In late 2020 an e-mail popped into my inbox from one of the German HSP groups - Ge(h)n mit HSP (Go with HSP) - this group have funded a study into which types of physiotherapy help those with HSP, and e-mail provided links to the results and various videos.

If you are keen to get straight to the point you can go reading now: https://www.gehn-mit-hsp.de/viewtopic.php?f=40&t=1493 - and if reading German is difficult, there is a translate tool at the bottom of the page. The research has been done by the University of Tübingen, in Germany, and the team includes; Prof. Dr. Ludger Schöls, Dr. Rebecca Schüle, Dr. Matthis Synofzik and Susanne Koch. (UK readers from the support group may remember that Rebecca Schüle came to the 2019 AGM) 

Each of the exercises is shown with instructions and videos on the TreatHSP.net website: https://www.treathsp.net/klinik/physiotherapie/uebungen - again, if you do not read German then you would need translate the page - and you'll need to have configured your browser to do this!

26 different exercises are given, and I give the headlines of each below. The full description tells you which muscles are being worked, and how to vary these. A video is given, and a set of photos to show you what to do. 

My top tip, if listening to German isnt your strong point (and you want to understand what is being said), watch the videos directly in YouTube and turn on closed captions/subtitles. YouTube can show those subtitles in another language. I have watched a couple like this, and it feels like hard work, but a good way of getting the information across - In YouTube the closed captions is one of the options on the bottom of the video. Once theses are turned on, you can use the setting button to change the language to auto-translate, and select the language you wish. 

Exercises:

1) Foot Tap - In this exercise, you put one foot on each box from a standing position and then take it back again. 

2) Box (side) - In this exercise, you step sideways over a box and back again. 

3) Hölzle - In this exercise, you step either forwards or sideways over small pieces of wood lying on the floor. 

4) Kneeling - In this exercise, you move one leg forward from the kneeling position and then come back to the kneeling position. 

5) Step up and down - In this exercise, you use both feet to climb a step and then descend again. 

6) Step down and up - In this exercise, you step down a step with both feet and then up again with both feet. 

7) Stair training - In this exercise, you climb up and down a flight of stairs.

8) Gear variants - In this exercise you train different gaits in order to specifically practice different areas of walking. 

9) Protective steps - In this exercise, you will repeatedly do large lunges in different directions, practicing self-restraint if necessary and preventing a fall. 

10) Knee rockers - Repeatedly bend your knees slightly and bounce back elastically.

11) Toe stand - In this exercise, you will repeatedly stand on tiptoe and then lower yourself back down.

12) Jump - In this exercise you will jump up repeatedly. Here you either jump on the spot, forwards or to the side.

13) Run - In this exercise, you jog in place and then forward.

14) Gait training - The aim here is to practice walking over long distances as daily as possible. 

15) On the ground and up again - In this exercise you go from a lying position to a standing position and back again.

16) Roofs - Repeatedly form a roof with the whole body from the four-legged position.

17) Chair back - Bend over in a chair with your legs straight; so stretch the back of the legs and lower back. 

18) Prone position on the couch - In this exercise, you lean on a couch or table and bend your knees repeatedly.

19) Warrior - With a large forward lunge, you stretch the hip flexors.

20) Straddle stance - In the straddle stance, you alternately shift your weight from right to left.

21) Cobbler pose - In a wide seat with the soles of your feet together.

22) Prone position - In this exercise, you can lie relaxed on your stomach.

23) Forearm support - From the prone position, prop yourself up on your forearms.

24) Hand rest - Support yourself from the prone position on your hands. 

25) Sliders in the supine position - In this exercise, you lie on your back and use a towel to pull one leg towards you and then straighten it.

26) Sliders in the supine position - In this exercise, you lie on your stomach and use a towel to pull one leg as close as possible to your body.

Reflections on these - I think these are a good set of stretches and exercises that can be done, provided that you're sufficiently mobile. There is a reasonable overlap with the muscles that I stretch in my daily stretches, but I might have to explore 15 and 22-24 in my stretches, and 3, 8 and 9 at other times.