Locked-In Syndrome | Tony Nicklinson’s Story

A locked-in syndrome patient has tweeted for the first time. It is believed to be the first time ever a patient with this condition has tweeted using special eye movement technology.

Tony Nicklinson, who seven years ago had a major stroke that left his body completely paralysed, but his mind unharmed, tweeted the simple message: @TonyNicklinson Hello world. I am tony nicklinson, I have locked-in syndrome and this is my first ever tweet. #tony The moment was captured by Channel 4 Dispatches ahead of a programme which broadcasts next week (Monday 18th June at 8pm) about Tony’s life and his forthcoming landmark court hearing, which will directly consider for the first time the question of euthanasia — where a doctor is authorised to take the life of a patient.

Tony’s story will broadcast on Channel 4 Dispatches on Monday 18th June at 8pm and afterwards online. For residents outside of the UK the following 3:00 minute segment has become available – http://www.guardian.co.uk/society/video/2012/jun/18/locked-in-syndrome-tony-nicklinson-video  


Great pain and expectations

November 30, 2011

Being involved in the Twitter community and following numerous others with Crohn’s and like belly troubles I have realized I am not alone when it comes to pain and the great expectations that goes along with having a chronic illness.

I have pain every day. My body hurts. My joints hurt. My belly hurts. My nether regions hurt from going to the bathroom ALL the time. Every now and then I am lucky enough to get my hands on some pain medication which, more often than not, doesn’t really do much to relieve the pain anyway. So sometimes I, like others with Crohn’s, have to go to the ER to get some heavy duty drugs to get a little relief. This isn’t usually met with kindness from the ER staff though. I know I personally have been labeled as “narcotic seeking” for an occurrence when my very own Dr. GI sent me there for pain management. Since three of the four major hospitals share electronic records in my area I am pretty screwed out of going to the ER for pain management now. I am usually immediately told there is nothing they can do for me. And if they [...] continue the story