I have found 2 online maps showing the locations of people around the world with HSP. One of these I had found recently, the other I've known about for some time.
The http://freyerse.org/index.html database shows people with HSP, PLS and ALS. This is based in the USA, and (according to the website) was originally set up by Frank Reyerse who was diagnosed with PLS in the early 1990's and aims to connect people with HPS PLS and ALS together worldwide. The map is branded with the http://sp-foundation.org/ logo, and the database now seems to be owned by them. Most of the people on the map are in North America and Europe, but there is also a reasonable number in Australia and New Zealand. I dont seem to be able to find the number of people shown. I have recently and previously tried to get added, but that didn't seem to get through. I've asked why.
The http://www.diseasemaps.org/en/ site has been put together by a group of chronic disease sufferers. The map covers a large (over 100) range of rare diseases, including HSP. There are nearly 90 people with HSP shown, mostly in North America, South America and Europe. You can find these also on Facebook https://m.facebook.com/Diseasemaps and Twitter https://twitter.com/diseasemaps. I was able to add my details and was visible on the map immediately.
It's clear to me that neither maps are truly worldwide because they have very few people in Asia and Africa, but perhaps this says more about either Internet access and the indexing of search engines or the activity of patient support groups in these parts of the world than it does about the prevalence of HSP.
One final map, on the UK HSP group website you can see a map with the locations of its members, but this is an image rather than an interactive map (link here: http://www.hspgroup.org/)
If anyone has spotted any other maps, I'd love to know about them.
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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Friday, 23 October 2015
Thursday, 8 October 2015
update to walking and pilates
A brief update on a couple of things:
Walking: At one of the AGMs I went to someone was describing their walking technique as "heels down", And I also recall hearing that from my physio. It seems like a good way of concentrating on walking. As an alternative, my orthotist suggested another way of getting the same result, and that is to walk "toes up". I've tried this, and it feels like a refreshing change to find a new way to think about this. I think I'll alternate between these.
At the same time, I'm also thinking about my knees, and making sure that I move my knee joint each step, particularly extending my lower leg before it touches the ground.
Pilates: New 'trick' at pilates this week. The class in the gym before pilates is body pump (or something like that...) in which they use steps within this class. This week my instructor suggested that I lay on the step for things like the half roll-back, which seemed to help me. Obviously, by getting my back up in the air, my legs are more straight, my hamstrings are not so tight, and that means I can get more out of the exercise.
My instructor observed "wish I'd thought of this week's ago". Looks like the step will be another part of my pilates apparatus. I think this will replace the foam blocks I'm using for those sitting exercises, e.g. spinal rotation.
A quick look on the Internet suggests this is called an "aerobic stepper" and the height is adjustable. I can't find the exact ones at the gym, but this is the kind of idea. http://stepup4fitness.com/21/equipment/aerobic-stepper/
Walking: At one of the AGMs I went to someone was describing their walking technique as "heels down", And I also recall hearing that from my physio. It seems like a good way of concentrating on walking. As an alternative, my orthotist suggested another way of getting the same result, and that is to walk "toes up". I've tried this, and it feels like a refreshing change to find a new way to think about this. I think I'll alternate between these.
At the same time, I'm also thinking about my knees, and making sure that I move my knee joint each step, particularly extending my lower leg before it touches the ground.
Pilates: New 'trick' at pilates this week. The class in the gym before pilates is body pump (or something like that...) in which they use steps within this class. This week my instructor suggested that I lay on the step for things like the half roll-back, which seemed to help me. Obviously, by getting my back up in the air, my legs are more straight, my hamstrings are not so tight, and that means I can get more out of the exercise.
My instructor observed "wish I'd thought of this week's ago". Looks like the step will be another part of my pilates apparatus. I think this will replace the foam blocks I'm using for those sitting exercises, e.g. spinal rotation.
A quick look on the Internet suggests this is called an "aerobic stepper" and the height is adjustable. I can't find the exact ones at the gym, but this is the kind of idea. http://stepup4fitness.com/21/equipment/aerobic-stepper/