The lightbulb Effect 'ON/OFF' Syndrome.... 

And just like switching on the lights I am back, optimised and raring to go!! It is no wonder that people's reaction to the ‘On/Off’ phenomenon is a strange one!

One of the first comments you hear from the experts is the strange terminology of describing a person with PD as On or Off. Basically ‘On’ means the meds work and you feel optimised and ‘OFF’ means meds not kicked in. The diagnosis of Akinetic Rigid Syndrome fits perfectly when meds are not working, in a nutshell I am like a warm blooded corpse, finding it difficult to function.

You can also be off in a cognitive way and a physical one or visa versa and 95% of the time both. Off in meds will be down to a number of factors the main being an absorption issue, the weather, having a virus. or over doing things etc etc.. This is why it is important that PD meds are not taken with food or close to eating and taken at the correct times. When ‘off’ I take a ‘rescue’ drug that is dispersed in water, it is absorbed and starts to work with in 2-3 minutes and will last no longer than 10-15 mins.

The disease is so unpredictable that planning anything in advance is near impossible. Infact every hour is different and believe me it is so damn frustrating. A life sucking parasite that takes bites out of you daily, wearing you down until there is not much left.. The sad part for me, when Off means one thing..HIDE!!!!
So what is it like to be ‘off’...I will tell you later………….