Its nearly Christmas again, and I thought I'd just have a quick review and summarise what I've discovered this year, and think about how different my symptoms are since the start of the year.
Knowledge:
I've looked into the different variants of HSP and the prevalence, the different muscles and nerves in the legs, and identified several different websites which contain this and other useful information. I'm beginning to understand in "layman's terms" some of the medical terms about the condition that get used frequently. You can still give blood with HSP. There's some evidence that many people with HSP have depression.
Symptoms:
With such a slowly progressing condition it is very difficult to spot things that are noticeably different. About this time last year I noted that I was having to actively ask my leg muscles to relax, and this has been pretty constant since this time (I noted this 6 months ago, too). I've continued to "trip over flat surfaces" which I've been doing for years. I'm fairly certain that my leg muscles become more tense when my emotions are high. I've now been doing Pilates for 2 years - this has certainly helped my awareness and I think its helped my flexibility.
Symptoms update: (legs muscle behaviour)
In the last couple of weeks, I've found that I've been laying in bed in the evenings and feeling that my legs are more stiff and heavy than they used to be. Of course I know they are the same weight, so that part is a perception thing. Is this the first part of my transition into having two weighty but useless limbs below my waist?
On the same theme, when I get to the morning, the first movements of my legs are stiffer than they used to be, although not consistently. I notice more effort required when swinging my leg over the saddle on my bike much more at the start of the day rather than on the way home, and I think I have to put more effort into making my legs move first thing. Perhaps I need to get my speedometer working again to use a measure of 'leg action'.
Just last week I slipped down a few of the stairs, which I don't normally do - so I make a note to myself to be more careful! I remember that I've felt on the verge of slipping a few times before, but this is my first proper slip.
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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Saturday, 10 December 2011
Saturday, 3 December 2011
Other Bloggers
So, I'm having a couple of "glitches" with my browser this afternoon. I was having a hunt around to find out if there were any other bloggers covering HSP. I found a few and I tried to follow them. It doesn't seem to remember these 'follows' though. I'll try again another day, but in the mean time here are the links, so I can remember where these are:
http://spandme.blogspot.com/
http://markdvorak.wordpress.com/
http://rollercoasterparenting.blogspot.com/
http://tokah.blogspot.com/
http://fsphsp.blogspot.com/
There were also a number of other related blogs I found:
http://glutenfree-wheelchair.blogspot.com/
http://thunderhous-yuri.blogspot.com/
http://neuromonitoring.wordpress.com/2011/03/03/motor-and-somatosensory-evoked-potentials-in-hereditary-spastic-paraplegia/
http://stemcellaware.com/
http://spandme.blogspot.com/
http://markdvorak.wordpress.com/
http://rollercoasterparenting.blogspot.com/
http://tokah.blogspot.com/
http://fsphsp.blogspot.com/
There were also a number of other related blogs I found:
http://glutenfree-wheelchair.blogspot.com/
http://thunderhous-yuri.blogspot.com/
http://neuromonitoring.wordpress.com/2011/03/03/motor-and-somatosensory-evoked-potentials-in-hereditary-spastic-paraplegia/
http://stemcellaware.com/