KnowledgeThis year I have learnt a lot. I have been to two conferences - the drug re-purposing one run in London by Findacure in February and the Ataxia/HSP one run by the Spatax network in Paris in April. Lots of bits of information has gone in, and I've been talking with various researchers and professionals at both conferences. I've also kept a brief eye out on the news reported by the US and Australian HSP groups.
SymptomsOverall, I think that 2016 has been fairly stable. I'd been thinking that things were getting gradually worse, but my appointment at the HSP clinic suggested that my gait might be better. The various stretches, in-soles, bladder medication and Pilates mean things aren't changing quickly. Looking at my charts I think I've been a bit less depressed and with less fatigue than previous years, I might be spotting the return of more bladder/bowel issues though.
For a while during the year I logged my sleep patterns, and I'm fairly confident that my fatigue is predominantly due to lack of sleep, rather than any HSP issues.
This BlogAs last year, the readership of this blog continues to increase. I'm continuing to get year on year reader growth. My audience remains broadly the same (predominantly US, UK, Russia, Ukraine, France, Germany, Turkey, Canada). The most popular posts continue to be the results of my survey, the various presentations/posters given at meetings and my general posts on research and particular HSP symptoms.
I've had various comments made that people appreciate reading what I have to say, which I'm very pleased to receive and gives another reason why this is a worthwhile thing to do. Thank you to anyone that makes a comment or connects up with me in some other way.
SurveyI was pleased that the results of my 2015 survey got similar levels of readership to my 2013 and 2014 surveys, confirming that these are of use and interest to people, and backing up my decision to do one each year, this year seeking opinions on matters to survey from others. I was very pleased to present the results of my first three surveys at the HSP meeting in Paris.
I'll follow the same path for the 2016 survey - analysis will start in the new year so I can analyse, write up and publish on 28th Feb - Rare disease day. This survey already has more responses that my other surveys, and there are still a few more days when I'll be taking answers!
Community ContributionHSP Community activities for 2016 included:
- Attending the drug re-purposing and HSP conferences on behalf of the UK Support Group.
- Using my network (thats you!) to unlock HSP on the Re(act) community
- Being an active member of the UK Support Group committee.
- Publicising my companies volunteer days benefit by reporting what I've used them for.
- Seeking out other on-line HSP communities principally to spread the word of my survey
- Continuing this blog and posting/discussing HSP things on twitter.