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brain injury

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Hello, readers new and old – hope you are all well.

Or much better than I have been lately anyway – it really hasn’t been a great time for me, with legs giving way much more, becoming weaker, even leaving me in bed for a whole day a couple of weekends ago.  Whenever I attempted to stand, my legs would just collapse from under me…

A lot of people, would think it would be great to spend a whole day in bed, not doing anything – no chores, nothing instead spending the day watching TV, films or listening to music.  However, let me tell you the reality of it – it is so boring being stuck in a bed, I would much rather be doing something much more constructive than watching endless episodes of CSI, despite it being one of my favourite shows.

On topic, I was recently reading an excellent blog post regarding a person’s experience of a condition in which she describes as having ‘many voices’ and in which the community of people with the same condition is large – each sharing their own personal experiences of living with a chronic illness.

And that got me thinking of my condition – long-standing brain stem lesion and spastic paraparesis.  To search information about it, is extremely difficult – most being medical journals, to difficult to understand for those without a medical degree!  And the big fact that I have not met one single other person with either diagnosis.

Many of the information that can be found regarding my condition are those usually found on websites about Multiple Sclerosis, as MS can present with brain stem lesions, and spasticity of which I suffer is a common complaint within the MS Community.

However, I do not have MS, so therefore am unable to really approach MS organisations for support and information.  Near to me is an organisation for people with brain injuries called Headway, however many of the case studies that I have read suggests that the organisation provides support and help for those with acquired brain injuries – usually those sustained in adulthood as a result of an accident or trauma.

So where do I turn for help and support with my condition? I feel as if I am one person, on my own living with this condition with nowhere to turn, or for people to listen and understand just exactly what I am living with day-to-day…

Image: http://www.bbc.co.uk/wales/audiencecouncil/sites/your-voice/

 

Hey Everyone

Just found out myself that this week (12-18th March 2012) is ‘Brain Awareness Week’, an initiative to increase public awareness of the progress and benefits of brain research. For people, like myself who are living with some type of neurological condition, are aware of the different parts of the brain and the function for which they are responsible for, and what can go wrong as a consequence of injury or disease to that particular part of the brain.

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For example in my case, the part of the brain stem that has been injured is responsible for co-ordination and balance leading to dizziness and vertigo, as well as suffering falls, and there is some sort of degeneration in the upper motor neurons in the brain leading to the spasticity and weakness of certain muscles.

If you are not familiar with the brain and the different functions, the ‘Brain and Spine Foundation’ a UK based charity has some excellent resources about the brain and brain injury.

And to find out more about ‘Brain Awareness Week’, you can find out more at the Dana Foundation Website:
There may be even events near you, I know there are events from the Cardiff University near to me, with some excellent programmes about the Brain and Neuroscience – would love to attend but given my current state, it is just not an option but never say never, maybe next year!!
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