I'm Jo
I live here in Saltburn-by-the-Sea
I was diagnosed with Parkinson's
six years ago in 2015
when I was 47
so when I was given my diagnosis
I mean I was just so
so shocked really
It was devastating not just for me
but for my family
Oof sorry my arm
So one of the things that I have
a problem with is dystonia now
which you might be able to see this
this side is cramping
it's really painful
not a lot I can do about it
and it starts when I wake up
and it's there till I go to bed
People associate Parkinson's with the tremor but
there are over 40 symptoms and
you don't know which ones you're gonna get
and how bad they're gonna get
My Parkinson's requires me to take some medication
and at the moment
I'm on a few tablets and a couple of patches
I'm on a
hopefully going to be on the waiting list
for something called DBS which is
deep brain stimulation which is a kind of
it's a bit like a pacemaker
but it's for your brain
rather than for your heart
So it's a couple of operations that would happen
where they basically drill a couple of holes
well either one side or two sides depending
on your individual circumstances
but they drill a hole into your skull
while you're unconscious hopefully and
they put these electrodes
down into the brain
to the area of the brain where the signals
which are all going haywire live
and then the second operation puts in a battery
into your chest wall
and they're connected up
and then specialists
calibrate all of that technology
and you're left with a couple of scars here
and a scar here
and hopefully all of this
will be eased
It's a really long period of uncertainty
the reality is that this is so slogging
day in day out
and having to manage my expectations
manage my hope
live with the discomfort every single day
DBS
deep brain stimulation is not a cure
but when feeling as I do at the moment
it's a bit like the scene in Titanic where
Kate and Leonardo are floundering about in the water
and they find that door
it's not ideal
but it's all they've got
and the DBS for me is that door
I might fall off it
I might not be able to get on it
but it's all there is at the moment