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!!