Recent News Stories

I have seen a few interesting stories in the news recently.

Gigs and Events

In the UK the company Ticketmaster are making it much easier for disabled people to be able to book tickets for gigs: https://www.bbc.co.uk/news/entertainment-arts-50247373

"Ticketmaster's scheme allows fans to submit details of their disability online. Once validated, the information is bound to their profile, meaning they can book tickets for all future gigs without extra effort.

In participating venues, accessible seats will be clearly labelled on the seat map like any other ticket - whether that's in the range of a hearing loop, or in a wheelchair-friendly zone, with a free companion ticket."

Gene Editing

This story talks about being able to edit DNA at the letter-by-letter level. https://www.bbc.co.uk/news/health-50125843.

I wonder how this has potential to help those with HSP. I can imagine that this has the potential to prevent further degradation of nerves, so potential is highest for those with an early diagnosis. The article is vague about timelines!

Mind Control Exo-skeleton

This story reports a person with paralysis from a spinal cord injury being able to use his mind to control an exo-skeleton. https://www.bbc.co.uk/news/health-49907356.

The persons has had implants placed on the surface of his brain to allow the signals to be read. At the moment this is limited to laboratory use, so it is early stages. The article comments that the system has also been used to control a wheelchair, which is an interesting adaption. I rather enjoy the concept that the mind control could be used for controlling things other than movement.

2019 Survey Open

** Results for this survey are now published: https://hspjourney.blogspot.com/2020/02/2019-survey-results.html **

Hello.

I am pleased to announce that my 2019 survey is now open. Questions are available in English, German, Italian, Dutch, French, Spanish, Danish and Portuguese. Click on the relevant link in the table to below to access the questions in that language..

The main focus for this years survey is medication, and I ask for details of up to 5 medications that you take for HSP symptoms. It is possible to comment about other medications for HSP symptoms if you take more than 5. If you do not take any medication, click "next" through until you get to the exercise and relaxation questions.

In addition, I ask questions on lifespace tracking and I seek a couple of perspectives. Similar to recent years the analysis of answers will take into account both mobility and wellbeing. I will collect answers until approximately the end of 2019, with results published on Rare Disease Day 2020 - Saturday 29th February.

Language	Link	Responses (14 Jan)
English:	http://bit.ly/HSPsurv19English	207
Português	http://bit.ly/HSPsurv19Portuguese	98
Français	bit.ly/HSPsurv19French	47
Nederlands:	http://bit.ly/HSPsurv19Dutch	21
Italiano:	bit.ly/HSPsurv19Italian	8
Español	http://bit.ly/HSPsurv19Spanish	11
Deutsch:	bit.ly/HSPsurv19German	2
Dansk:	http://bit.ly/HSPsurv19Danish	1

Starting Full Analysis (14 January)
There are almost 400 responses to the survey so far as I start the analysis. First job after translation to English is to eliminate duplicate entries and filter out those who didnt answer any questions to give the sample size for the analysis

Interim Results (3rd December)
I have combined the English and French answers together and undertaken a quick analysis of some results to show a picture of this years results. I'd love more people to answer please!

Out of around 170 people with HSP:

• 85% consider themselves to be disabled
• 50% feel that they are vulnerable
• 30% feel that they are isolated
• 25% have a care plan

About 170 people answered the life-space questions which gives a feel for how much people get out and about. 

• More than 90% leave the room they sleep in every day.
• More than 95% go outside more than once a week, with about two thirds going outside daily
• More than 90% go to their neighbourhood at least weekly, with one third doing this daily
• More than 90% go to a nearby town/city/place at least monthly, with half doing this more than once a week

About 140 people answered questions on activities and relaxation.

• Stretches are undertaken by about 95% of people. More than half do this at least daily
• Walking or running is undertaken at least daily by about half of people
• Physiotherapy is undertaken weekly by about a third of people, and less frequently by a quarter
• Cycling, manual wheelchair or swimming are undertaken by more than half of people
• Music is enjoyed by two thirds of people, half of which do this daily.