Saturday, 28 December 2013

Review of 2013

Another year has passed and its time to reflect on things and consider how different things have become over the year.

This has been a bit of a mixed year on the knowledge front. I had spotted that some of the most frequently viewed posts related to HSP symptoms, and I've done some investigation here. I also met with Evan Reid and went to the HSP support group AGM getting lots of information there, and also various new connections made with lots of avenues to explore. I've not been looking too much at the PubMed database this year. Perhaps I'll chalk 2013 up as a connections year rather than a knowledge year.

Looking back at my 'symptoms update' posts I can see this year has been mainly about getting more stiff and finding certain things more difficult to do than before. I also have been spotting some issues on the bowel/bladder front. I speculated that this might be the start of bigger/quicker changes.

This Blog
I 'came out' on rare disease day (Feb 28) and joined up my various on-line presences. I've been more active in talking about what I have been blogging about, and indeed more people are reading this. Thanks!

Following my posts on the UK HSP Support Group AGM I've been asked to regularly write for the newsletter, which is an honour to do.

I also launched my first on-line survey, which has had many (over 120) responses, and I'm looking forward to analysing the responses early in 2014. The survey will be back in the Autumn.

Other things like the filming project and the gradual expansion of pages on the blog have taken a bit of a back seat in the year partly as a consequence of this, and partly due to being busy with my young family and busy at work.

Monday, 16 December 2013

Another outlet for my messàge, communities update

The other week I met up with Ian Bennett of the UK HSP support group. Ian has asked me to write a regular feature in the newsletter, covering the medical side of things. I was pleased to accept. Effectively, this will partly be a re-write of some of the things I have already written, and mostly a write of things I haven't yet found!

Towards the end of November I signed up for the patientslikeme website. I quite like the tracking tools they give you. I had been trying to find an app to allow me to track these things, but that didn't seem to be too easy to find. The patientslikeme site let's you track some of the relevant symptoms, grouping into mental, physical and social - which draws some parallels with the presentations from the AGM. I'll keep updating my details, and give feedback. My immediate grumble is that I don't seem to be able to update my details from my tablet.