1st attempt at 'blogging'

Living with death   

Eight years since diagnosis & 10 days have passed since I received the devastating news that the symptoms of my Inherited Prion Disease illness have started , by my reckoning (based on specialist feedback) this gives me between 1 & 2 yrs life expectancy.

Inherited Prion Disease (IPD) is a untreatable neurological condition ,also known as inherited CJD ; the symptoms of which you may be more familiar with.

These symptoms include:

• Behavioural Symptoms
• Communication Problems
• Memory/Cognitive Deficits
• Movement Problems
• Swallowing Problems
• Visual/Perceptual Problems
• Seizures

If you are interested in more details you might want to read more details; check out the website:

http://www.prion.ucl.ac.uk/clinic-services/information/signs-and-symptoms/

The illness means that holes will appear in my brain and affect all of the above in one way, shape, or form.
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I thought I'd try writing a blog to capture my journey and use as a therapy for myself and it may be of interest to others .....

I'll endeavour to make it personal ,sensitive and respect confidentiality at all times :)