So what is it like to be ‘off’...

Awful, embarrassing, degrading..I could go on and on but simply put being off is a bizarre and strange feeling and above all else that helpless feeling.

Of course this will depend on the level of ‘off’. . For me prior to DBS all my ‘off’ times where harsh and dramatic, since DBS although I still go ‘off’ they have become far less dramatic. That said I do experience some weid and strange periods, daily. I may go rigid, my speech may be slurred, my legs wont work when they should, I may freeze, stumble, have an accident!! and so on….A complete ‘off’ (no meds and DBS off) is scary I have very little function and I really am a character from those zombie games.. but please do not shoot me!!

Regardless of the level or the reasons for it, I will never understand why I feel so embarrassed, vulnerable and no matter what I tell myself, boy am I paranoid! Anyway, it is real and it is part of me , so if you see Rusty out and about and suddenly he stops moving or acts a little odd be normal be yourself, as it is normal for me. And remember I may be ‘off’ but I am not deaf!

We should have a warning sign that can be erected to warn the public.. you know like the triangle sign for the car!!

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………….

12 September 2015

wow here we are nearly half way through September and for me that means wedding anniversary time!! and yes I can recall the day. 14th September 1991, it was a Saturday and no footy!! although I did sneak off to catch the footy results..and got caught hehe! I will say more on Monday!!

On the broken bone front all healing and no major disasters so with luck all will be fine and dandy. Last Monday we had a trip to Bristol to see the Neuro team, they want me to stay for a week in December so I can be assessed... more on that to come.

Thursday our good friends Brian and Jan Davies popped up always ggreat to see Bryn as he always makes you laugh even thoughh he has PD. The man is amazing.....oh good luck on that bottom thing lol

Friday Dentist...hate it and even worse with PD bbut it was OK...For info there are specialist dentists around, they specialise in disability contact the NHSfor details.

OK time to watch MoTD even better as Everton will be 1st on after whoopi Chelsea 3-1..yes we did...