Hello to my first post of my brand new blog.

Just a little about me … I am 25 and from a town in South Wales, United Kingdom.

A little over a year ago, or is it two??  Anyway, I was diagnosed with a long-standing brain stem lesion.  What is that you ask?  Well, to answer that question, a lesion is by definition any abnormal change involving tissue or an organ through disease or injury. With mine, it is basically scarring on the brain stem.  The brain stem being the part of the brain that sits right on the bottom of the brain connecting the brain itself with the spinal cord.

Am not sure  about all the technical jargon involving the brain stem, or indeed exactly the part of which the scarring is located.  But for me, the lesion causes, and has caused since the age of 8 chronic and disabling dizziness – the sensation that the world around you is moving, for many this sensation feels as if the room is spinning around… although for me it generally feels as if my world is pulsating back and forward… back and forward.  And the general feeling of disequilibrium… not of being stable, as if at any minute you are going to fall.  For example, when standing up, and for many of you, you can stand there completely still like the Queen’s Guard you see outside of Buckingham Palace.  However, in my case I am unable to stand still, and instead my body sways in a back and forward motion.   The dizziness used to come and go in sporadic episodes, but now as my brain has changed and grew my illness has progressed and now I am in a state of disequilibrium 24/7.  The vertigo or ‘the sensation of the room moving’ comes and goes in episodes, although these episodes seem to be much more frequent than they have ever been.

The brain stem is also important for balance, and unfortunately for me do not seem to have much balance!  As a consequence I fall regularly and am unsteady on my feet… so if you ever see me on the street, I am not drunk, OK??

As well as those issues regarding balance and the dizziness, I also suffer from something called ‘spastic paraparesis’.  Spastic paraparesis causes muscle stiffness and weakness in the legs, in some cases, which has started happening with me can affect the arms also.  The SP has meant that my legs have become very stiff, making it difficult to walk and causing discomfort and pain and as they are weak I am unable to stand for any more than 10 to 15 minutes before they collapse from under me.

Well, that’s it for the first post, folks!  I’ll be updating whenever… more about my condition, more about me, commenting on stories that affect me, that kind of thing…

Hope you enjoyed… and feel free to comment too…

 

Origin of Image: CancerHelpUK