My operation for deep brain stimulation was
in my mind a resounding success
It's about 10 weeks since my operation now
and I feel considerably better than I did beforehand
It was quite subtle
When the device was switched on
When the pulse generator was switched on for the first time
I knew that there wasn't going to be some sort of Christmas light switch on
At you know, Regent Street
Hah, I'm better!
I knew that was not going to happen
but secretly I did hope that was going to happen
So I felt a little bit sort of...
Sad
I'd been through this pretty traumatic physical experience
at a time when things were complicated for me personally
and um...
And so I felt yeah...
a little bit deflated I suppose
And then what happened
about four or five days later
I was sending a message on my phone and I realised
that I was using my left hand
To...
to tap the message out
And it was that awful...
I'd just done it naturally
My left hand up to this point has been like a false arm
I've just had no real use out of it
Before the operation, I just literally wanted to unzip myself and climb out
because I couldn't bear it
It's hard to explain, it was just relentless
I do still have the dystonia
in my hand and my arm particularly
and up into my neck
The pain is diminished hugely
So, as part of my new beginnings I have
Da-dada-da-ta!
My box of tricks
Most importantly in this little box is my lady
This is me
Small but fierce
but she can relax a little bit now
She can put her axe away
because I've now got my
My kit
For anybody who used to go to festivals
And understands the power of an old Nokia phone
which will never die
this is based on that
The reduction in my dystonia has resulted in
a reduction in my pain
Which has helped with my fatigue
So I'm not spending as much time in bed
I'm able to stay up to the dizzy heights of 9 o'clock on an evening
I'd got to a point where
It was about 7:30 and I was done
I was absolutely shattered and I was wanting to go to bed
Because I...
I just want to be done with it
I wanted to be done with the physical manifestations of the Parkinson's
It's...
It's hard to explain
but for me it's just been liberating
It feels like I have an opportunity to...
I don't know...
get my life back a little bit
People say...
Do you forget that you have Parkinson's?
and for me....
Never, it's years
But now...
There are times during the day that I can
drift off and do something and forget that it's...
Forget about it for a moment which is
Unbelievable really
It sounds simple
it's not that I've got any giant expectations to go and conquer the world
I can go out for dinner
I can eat rice
Or soup!
I can put eyeliner on
I can live independently
I can write
These are small things which make a massive difference to me
I can't say enough how grateful I am to the NHS
and everybody in it
Those people who have cared for me
Looking at the video of my experience was...
What struck me was all of those people
and all of that energy and time and focus
and training
For one life
It's huge!
I just feel really, really privileged
to live somewhere that we have the National Health Service
and I...
I would take a bullet for it any day
I feel like...
life is just opening up again in a way that I hadn't expected
I'm grateful for it and I'm not going to squander it
I'm going to go out there and have the best
Brilliantist
Most wonderful life that I can
I think about where I was when we met on the pier
At the beginning of this process and...
and where I am now and it's profoundly different
so I feel optimistic and hopeful for my future
and I think if this is possible then what else is possible?
With funding and with support and energy
There's no reason we can't find a cure for Parkinson's
I had quite low expectations
I hoped that one person might get a better
experience of their Parkinson's
by seeing somebody else live with Parkinson's or...
go through this operation and
already the feedback that I've had
has suggested that it's been helpful
to at least one person, so job done
You know, I...
I hope that this makes a difference to many more people
even the healthcare professionals who might understand a little better
what it's like to be on the receiving end of this care
I don't know
Who knows what might happen as a result of this film
But hopefully it will do some good
What is the future?
I don't know, I don't know
Exciting things
And actually it's the fact that there is a future
It's the fact that I can think I've got some choices to make now
which I didn't have before
I tried to describe it to somebody and I said that it was magical
and it does feel magical to be in so much pain
that I literally wanted to step outside of my own body
I wanted to just unzip myself and climb out
to be able to be outside
enjoy this lovely amazing windy day
Having the energy to go for a walk
I feel like I've got my life back