A blog by Boo

A blog by Boo

A blog by Boo

Random stuff that I think about

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June 26, 2011 , ,

Newly diagnosed and a concept called 48…

Posted by Henderson-Heywood 3 days ago3 commentsEdit | Delete
‘Its Parkinson’s’ he said, I was relieved, better to know your enemy so you can form your attack. I thanked him, he looked surprised, I was calm, smiling and told him it was OK. Outside in the Hospital car park an autumn chill suddenly cut me, I wasn’t brave anymore and I sobbed.
All of us can tell a story, all of us remember the day our Consultants came clean and we knew finally that the odd, quirky previously unexplained happenings now had a seriousness that belied their individual impact.
The next part of my story is what troubles me, I got home and went on the internet, I accessed PUK site and the first image I saw was from a feature they had been running for a few weeks on DBS. It was shocking to see, and I felt sick. Since that day nearly 7 years ago I have never googled PD nor been on any PD site and read any information, patient posts & blogs aside. fact. I have been wanting for many years to launch ’48’ a service that handles patients in the first 48 hours of a diagnosis. A service the Consultant recommends as the first port of call. A service designed to be gentle but strong that guides the newly diagnosed through some first basic steps. A service I would have welcomed and used. How you are shaped in those first hours of realization I believe impacts greatly on your forward journey. Its a service I hope one day exists.


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