So, if you've been wondering what on earth I could do with information about 1162 research papers you're not alone. I've been wondering myself as well!
The short answer is that I'm going to read them!
Naturally, many of the papers themselves are only accessible through subscription websites, and so the initial trawl is to look at the abstracts of the papers. I'm doing four things with this:
1) I'm adding the text of the abstract to my database
2) The abstract also includes the location of the research for the paper, so I'm adding that as well (there's a side analysis I'd thought about for looking at research locations)
3) I'm giving all of the papers a "relevance" score, out of 10 - where a low number is that the paper isn't particularly relevant (perhaps HSP is mentioned when the paper is looking at something else) and a high number is where the paper is very relevant.
4) I'm adding tags to the papers so that I can search on those tags, perhaps in combination with the relevance to get a set of papers.
This is going to be a slow process. I've done 10 papers so far, so I'm not 1% through the list yet. Oh, and the search results now gives 1185 papers, so there's another ~25 papers which have been published since August, but I think I'll leave the compilation of those until next year. It might be that I add a few extra fields into the database to group the papers further, but I'll get a few more papers through the list first. To save you reading about this every few weeks and marvelling at the snails pace that I do this, I'll wait till I get a sensible way through and provide some highlight information, and perhaps once I've got through this data pass I'll dig out the most relevant papers and try to get the full papers.
This blog records my journey to Hereditary Spastic Paraplegia (HSP, also known as Familial Spastic Paraparesis or FSP). I was diagnosed with SPG4 in 2009 when my wife became pregnant with our first child. I currently wear insoles, do daily stretches and weekly Pilates. I take medication for my bladder. I tweet about HSP, RareDisease and other things @munkee74.
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Tuesday, 20 November 2012
Sunday, 18 November 2012
Symptoms Update - Movements I cannot make
OK, an update on things I cannot do...
The Pilates group that I am a member of is an intermediate level. This week we did two different moves which I found particularly challenging, one simple and one quite complicated.
The simple one is easy to describe - sit with my legs crossed and my back straight, and then rotate each way with my arms out straight. I've commented here before about sitting with my legs crossed, and doing without holding on to my knees was enough of a challenge, so much so that I couldnt get any further. I need to sit on a block to get this to work.
The other move was the Pilates star, which we started to work on for the first time this week. If you look on youtube you'll see various people doing this competently, we were only trying part of this - to raise our leg and circle it. My problem was not being able to raise my leg sufficiently off the floor - I'd have been able to circle it if there was a hole in the ground.....
It makes me wonder how long I can go on saying "no significant symptoms" for. I guess its all in the definition of significant.....
The Pilates group that I am a member of is an intermediate level. This week we did two different moves which I found particularly challenging, one simple and one quite complicated.
The simple one is easy to describe - sit with my legs crossed and my back straight, and then rotate each way with my arms out straight. I've commented here before about sitting with my legs crossed, and doing without holding on to my knees was enough of a challenge, so much so that I couldnt get any further. I need to sit on a block to get this to work.
The other move was the Pilates star, which we started to work on for the first time this week. If you look on youtube you'll see various people doing this competently, we were only trying part of this - to raise our leg and circle it. My problem was not being able to raise my leg sufficiently off the floor - I'd have been able to circle it if there was a hole in the ground.....
It makes me wonder how long I can go on saying "no significant symptoms" for. I guess its all in the definition of significant.....