spastic paraparesis Archives – Page 7 of 7

Hey Everyone

Haven’t posted in a while, for which I apologise for, but lately am finding things so tough as of late.

The symptoms that I experience with my condition – as I have mentioned before:

Dizziness
Stiffness and weakness in legs (Spastic Paraparesis)
Sporadic episodes of vertigo with visual disturbances such as double vision, tunnel vision

All these seem to worsening… for example, a couple of days this week my legs were so weak that I could barely stand, and as a consequence most of those days were spent in bed watching mind-numbing day-time television, or listening to audio books – I love reading but the visual disturbances were so bad that I really was unable to focus on a book, and after several recommendations from others in a similar position to mind, bought some audiobooks to pass the time when I am having bad times and unable to read.

My legs were trembling so bad, a feeling similar to when your legs feel like jelly when you are nervous, that I just was unable to stand for very long, so really was unable to do much at all and realised how much we all take for granted – going for a showers, making a drink or lunch for ourselves, and so on. The dizziness was also very intense, as I have mentioned before the dizziness is constantly there, but the intensity of it changes from day-to-day, sometimes moment to moment. The way it makes me feel is as if I am totally unbalanced, and unable to ground myself, and when standing I can literally feel myself swaying back and forth. The episodes of vertigo, however differs in that they are episodic, and so come and go (although are becoming much more frequent) and with the vertigo comes the sensation of the world moving, for many it feels as if the room is spinning. However, I would describe it as everything moving back and forth, and often includes tunnel vision.

As I was so bad my parents pushed me into making another appointment to see our local GP.. after some thought I have made one, although I just get this feeling that I am just wasting the time of the doctor, as it has already been said that there is nothing that can be done, so it there much point in going? Should I ask to see the neurological consultant again, even though they are unable to do anything for me?

And on top of all this – it’s also the emotional impact living with a chronic or life-long condition, the feeling of being alone, that no-one else understands what you are going through. The isolation of being in a room by oneself, no-one to talk to…

Loneliness — Feelings of loneliness and isolation...

Through all of this, not being able to go by myself, in case of a fall or if the visual disturbances come on with no warning, leaving me unable to really focus on where I am (dangerous and could lead to an accident), it has left me very lonely and with no friends, apart from my online support network which is fantastic, but just wish that I could live a normal life, and do things with someone else such as shopping, or going for a cup of coffee, etc.

However this is the card I have been dealt, and maybe there is a reason why ‘this’ did happen to me., and am meant to do something with everything I have dealt with or have learnt from all of this… Now I just need to find the answer and what I am able to do with my life….

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

spastic paraparesis

Fighting the Battle…

An Introduction…

Rhiann's bookshelf: read