The great white hope? Overrated?

Come with us and join us in our journey, our collective journey, towards the hope of something better, of a break from Parkinson's.Most of us have achieved this, but not all, and the break from Parkinson's is never complete, as perfection is never attained, although some have come close.

If you are contemplating the same journey, read well, learn all you can, choose your hospital after some thought and some research, and allow up to a year between the initial decision to go for it and the actual operation or operations.

About one in ten will fail at the first hurdle - either the neuropsychology test (how you process information, short-term memory) or the video assessment (first off all drugs, taken through a series of exercises like finger-tapping, drawing spirals - basically a picture of what you are like in reality, then after being given 250mg Madopar or Sinemet, the same exercises again - are you "levodopa responsive"?). If it is felt that the risk would not yield enough to warrant an operation, then it won't go ahead.

Making that first decision to go for it, must be tempered by the knowledge that you might not be considered suitable - a sort-of guarded hope.Then you see your neurologist for a referral - if it is agreed, then a letter is written to the Health Board asking for funding to be guaranteed - Form E112. You are sent forms to fill in etc. A number of people have said that, if they have gone to the VHI for funding, if the patient is taken into the hospital for the assessment, and a decision is made not to operate, that there have been difficulties getting some of the tests covered, even though they are supposed to be covered if completed as an in-patient which is how these assessments are done.

So, read these pages, do some thinking, read up about the procedures, be aware that you need to be committed to the idea, and determined to see it through.

But, what if you ask about operations that were not successful? Well, there have been some. Part of the problem is that setting the pulse generator/neurostimulator/pacemaker involves trying a lot of different combinations - there are hundreds - and generally one will be found that suits you. Sometimes however it can take a while - your writer took over a year to find one that suited. Bear in mind also that at the moment you have to go abroad for these operations, and so it turns a trip to hospital into something more complicated altogether. And one neurosurgeon says there is a window of opportunity and you can be too early or too late...

Commitment

LINKS TO SOME OF THE PATIENTS' ACCOUNTS OF THEIR EXPERIENCES:

The Unknown Road
My Pallidotomy in Sweden
My Bionic Brain
My Oxford Experience