Sunday 5 December 2021

Its time to admit



I have a rare and progressive neurological disease called Akinetic Rigid Syndrome summarised as "parkinsonism". The major features are bradykinesia , rigidity, slurred and poor speech, organ failure, tremor, dystonia and dyskinesia. 

I have had many brain operations and lots of medications to take. I also have deep brain stimulator that produces between 4 and 12 amps, this is planted deep in the brain the basel nigra. 


To get through a game session is so hard, in order to play I have to increase my stimulator amperage and take my ‘rescue’ meds.


Most sessions I drop my controller up to ten times, or pull out the cable. I am easily confused and struggle with instructions. I have double and blurred vision, the right eye is barely usable, between 15 and 25% vision, bladder and bowel incontinence etc… these symptoms do not tell the full story, there are plenty more and plenty more to come.