CHANGE THAT CHANNEL........and now is it worth the hassle...

Last week I attended Southmeade Brain and Neuro Science ward to undergo some tweaking and assessments. I absolutely hate the assessments as I am off my meds. To try and explain what it is like to be totally 'off' is a difficult thing to do, and of course I do not expect anyone to fully appreciate or understand the impact the disease has on me in its truest form.

I encourage you to watch the film AWAKENINGS staring Robin Williams and Robert De Nero. (The story of a doctor's extraordinary work in the Sixties with a group of catatonic patients he finds languishing in a Bronx hospital. Speculating that their rigidity may be akin to an extreme form of Parkinsonism, he seeks permission from his skeptical superiors to treat them with L-dopa, a drug that was used to treat Parkinson's disease at the time and continues to be used). Well in a nutshell that is me in the raw catatonic, rigid 'a warm blooded corpse' now known as Akinetic Ridgid Syndrome (see previous blogs)....Oh I digress....

OK, following last weeks DBS and PD assessment my DBS channels where changed from 'BiPolar to Monopolar. (see Deep Brain Stimulation Programming: Principles and Practice
By Erwin B. Montgomery, Jr., MD).

Anyways I have found the transition very difficult and despite having a very good day yesterday by the evening I was in a right old mess physically, and today is not much better either. You see the DBS only helps with the 'motor functions' movement and suppresses the rigid symptoms and in theory allows for a longer 'on' period.
To be honest with you I am getting a bit peeved and fed up of being 'tweaked', be it trying new meds or a different drug regime or whatever else I am asked to do. I am not knocking the professionals but when you think about it the only person who truly knows the effects of the illness is the person who suffers with it. To see my wife Ali upset when I am having a 'motor or cognitive or both off period' is rather distressing so its not just me that has to suffer. The DBS is working, my physical appearance is better but .... there is always a but!! To be Continued......