Hello all my brothers and sisters in arms,
I have something I will share with you all for the past year I have been involved with a clinical trial the results off which should be available to me a short time after next months final assessment, for that assessment I have to go into an off state which off course means all hell breaks loose and my symptoms are at their worse.
Parkinson's UK have never filmed someone in an off state and they have asked my permission to do so and I have agreed, this is going to be done only for the website and for the purpose of science.
My symptoms are quite heavy going especially my double edged b**** the Distonia so I will not necessarily be me until i take my meds then 40 minutes or so BB come backs.
My reason for agreeing to this as most of you know I am determined the public in general WILL learn that PD is not just a tremor and is not just an OAP condition and they will also learn just how bad this uninvited guest can be for those of us whom have to deal with this everyday.
You all know me to be straight talking as I often say I know of no other way so in a strange way this is no different be it visual rather than vocal and I do know myself just how ignorant some people are towards those of us with any type of disability.
I will not ask any of you to make a point of watching the video when produced that is purely your decision i just wanted to warn you it will get quite bad for me but after taking my meds Karen BB will come back and normality can then resume.
Going into an off state does not hurt me it distresses me I will be with a very special lady friend from this forum whom I have not yet actually met but I know she will look after me, so my very heartfelt thanks goes to her and all of you whom will be wishing for me to stay strong through out this period of time.
Just one thing if any one thinks they can talk me out of this be assured my mind is made up and I will not change my mind the public will be informed and if this is required to enable them to do so then so be it.
My good wishes to you all and take care brothers and sisters.
Your friend BB.