The last two weeks, my dystonia has been pretty awful
After what seems like a very very long time
It's T minus 1 day and counting before I find out
whether or not I'm suitable for
Deep brain stimulation
so tomorrow I should get a call from the hospital
to say yes or no following a multidisciplinary team meeting
that takes place tomorrow morning
So...
I'm a bit...
I'm a bit anxious
That's probably a bit of an understatement
Parkinson's is full of uncertainty
What's going to happen when and how badly
and this is almost an extension of that
Yes, it'll be fine in the end
Morning everyone
Hope you're all well
Hiya
Let's get started with the first patient
Dr Ledingham is going to present her
and then we can have a discussion about what we think
Great ok
Yes so the first lady is
is a lady, Joanne Yaldren
Who was referred to us by Dr Archibald from Middlesbrough
What is the current level of medication at the moment?
Madopar
25 of 100 milligrams, four times a day
Or maybe a bit less than that
With Rotigotine
She was on one milligram per 24 hours
When we last saw her
And some Rasagiline
So not much
From the Parkinson's side of things
Many motor fluctuations
Motor fluctuations
And these nasty
diphasic dyskinesia
She comes on and she's very wriggly
Dyskinesias?
Yea
So in terms of gait and things?
Gait's fine
Gait is fine
Can I have your report please Emma?
Is that ok?
So I completed the assessment with her a few weeks ago
She was lower than expected
on one part of the assessment
The level of kind of effort and attention
Wasn't there to assess that properly
So overall from a neuro-psychological perspective
I don't have any concerns
Thanks Emma
Two things, one thing is that there is a significant
dystonia component in here
She's not had any genetic testing
I advise that we ask her to take part in the ROPART study
so we can check if she has
She carries a genetic mutation
She is 54 at the moment
and she developed Parkinson's in her late 40s
So very early onset
If I'm not wrong she mentioned that
sometimes she has
the sensation that someone else is in the room
We want to rule out that she carries a GBA mutation
Just because then we need to let her know
that people who have carried the GBA mutation
might do not very well cognitively
after DBS
so I think she should be informed of that
if she carries the mutation
and that will help us like inform her
It wouldn't necessarily say that we're not gonna do it
it's just to help inform her about outcomes
Yeah I agree
Shall we have a look at the scan then?
Dystonia seems to be her main problem at the moment
The best way to get that in control
would be I think via the GPI target
she's got some sort of Virchow-Robin spaces
within the basal ganglia
but I think the GPI is ok to target
And then go back down to the midbrain
There's no huge abnormality there
that's gonna stop us from targeting
either GPI or SDN
Given the history I think we should probably go for GPI on this lady
Ok, seems to be a good candidate for DBS
Brilliant, thank you
I'm currently feeling like I'm about to have a panic attack
I'm really...
Yeah I'm quite anxious
Jo, look at me
My support squad
It's been a year since I first started the process
of contacting Parkinson's UK about recording
this journey of my DBS
And here we finally are and I'm quite anxious
so I get to find out today
An hour and a half later than expected
so what was already quite a long day
has now become even longer
so I'm hiding my hand because it's all going...
A bit sort of
A bit weird
Quite a lot of adrenaline
Crikey
How can the dog be this calm?
Oh here we go
Hello
Hello, is that Jo Yaldren?
Oh hi
Hi
I'm good thank you
Okay, okay
Brilliant, so hopefully within the next month or two
I will have a better idea
Ok, thank you
Bye now
Thank you, bye-bye
Could you hear?
No! So?
Ah
So what they've said is that they think because
I developed my Parkinson's very young
They want to rule out, um
They want me to have another screening test basically
a genetic screening test
Um so...
There's a research trial that's going on
so they've asked me if I want to join that trial
It's a blood test basically
So they'll do that because they
They want to make sure that I'm not
If there's a genetic component
then they want to make sure that I don't
If I have that then potentially I would have
Have a quicker cognitive decline
And because in the past when I've been on the dopamine agonist
I saw those sort of shadows
Those people at the bottom of the bed
And then when I stopped taking the meds, that cleared away
But they want to make sure
that's not something that's wrapped up from a genetic point of view
They want to make sure that's not something that will get worse
So basically, it's just
I'm still suitable for DBS
but they wanna do another screening test
Quite rightly, they want to just make sure that I'm not
going to have a therapy in terms of the DBS
that's gonna make me worse
I'm going to breathe in and out
and take the positives from it
It's everything...
I'm basically where I was this morning
I don't know
And they're just gonna be safe so
I'm just gonna have to
take it by ear
Play it by ear