that’s really difficult when you have
Parkinson’s there was Aladdin can you
actually hear me great I’m Emma
I’m currently 33 but I was actually
diagnosed at the age of 29 with
Parkinson’s disease it came as a bit of
a shock as you’d expect
I’m not a 60 year old man so it was not
what was expected for me in my path and
it came after a strange feeling in my
right hand for probably about a year
that I’ve been ignoring and I just
didn’t feel quite right I felt weak and
I felt like I couldn’t do things that I
used to be able to do my friends at work
were fed to my hand as the claw if you’d
seen the Jim Carrey film laiá laiá the
claw I can do it well fina and and I
ignored it because I was busy and
because I was 29 and because my life was
more than going to the doctor’s and
important things like that and I didn’t
want to go and get it checked out
because I was worried and I was
concerned about what it might be but I
was thinking carpal tunnel trap nerve
you know at worst it was going to be
something like that and then I was at my
dad’s 60th birthday party and he’d been
concerned for a long time he shook my
hand a lot whenever I saw him which
seemed like a really formal greeting
from your dad but he was testing the
strength really sneakily every time I
saw him to see whether I was getting
weaker and I could always tell that he
was concerned and I was at my dad’s 60th
birthday party and a friend of Artie’s
the nurse said to me what’s wrong with
your arm and I thought oh for God’s sake
I’ve been dodging it for a year she’s in
health care so people are going to
listen and I promised my dad is the
worst birthday present ever that I’d go
to the doctor and get it sorted I think
I’ve got him something else as well
and I went to the doctors and she had me
walking up and down and I thought fair
legs love I don’t know what you’re
thinking but this is in my arm you know
this is the problem we’re having in my
arm she said you don’t swing you arm
when you walk I didn’t really know what
that meant or what that had to do with
anything and she sent me for a
neurologist appointment and again I
didn’t know what neurology was I googled
it a bit and it came up with some sort
of things that sounded scary but I still
wasn’t concerned I went to the
appointment by myself without my
grownups and I was completely sort of
unaccompanied and they said to me
there’s a few things that could be but
we’re going to send you for brain scans
it could be Parkinson’s disease it could
be Wilson’s disease or it could be
Huntington’s disease and I googled all
of them and I was actually rooting for
Parkinson’s because I wouldn’t die from
it I think it’s probably the only time
anyone’s ever said that that they’re
rooting for Parkinson’s and I went back
to work and in a cruel twist of fate
where they said to me don’t think about
any of these conditions I was actually
working on the Parkinson’s UK which is
the big charity website at work at that
point in time so on every computer
around me it was there wherever I looked
and the more I read up on it the more I
thought this might be what I have this
could be what I have and it scared me
but it was an answer and I felt sort of
liberated by having an answer and I went
to my appointment where they told me
what I had and I took my grownups this
time because I realized we were on to
something big and they told me it was
Parkinson’s and I felt relieved but also
I was scared I didn’t really know what
the future held all my plans as a 29
year old were not kind of proper plans
it was you know going out what I was
going to buy next where I was going to
see my friends the next time I saw them
but I had those kind of plans in the
future of having children settling down
continuing my career and suddenly I was
a bit worried to say the least that
actually some of those things might not
and I was okay at first I was alright I
was confident about it my family and
friends were around me and they were
hugely supportive but I found myself
slowly falling into the trap of saying
no to stuff and I’d previously been not
the most positive person but a positive
person you know I said yes to things I
did as much as I could I went out and I
tried new things but my friends would
say to me you want to go to the pub and
I’d say oh no I don’t think how well
I’ll leave it because I hadn’t worked
out how to talk to people about it yet
and that was the biggest deal for me was
knowing what to say so they knew what to
say back to me so that I didn’t get that
little tilty headed petty face that
people pull at you when they don’t know
what to say when you’re actually okay
with what you’re dealing with and so I
became a bit kind of lonely I was living
with a boy but I was finding that I was
kind of separating myself from him a
little bit because I didn’t really know
how to talk about it and I’d not go to
these drinks events and I’d not go to
the pub and I’d not go and do things my
friends were doing and I sit at home
when I get upset because I was
frustrated and angry and stubborn about
the fact that Parkinson’s was doing this
to me and it was only one day that I sat
there and I can actually see it clearly
in my head is the day that my whole
outlook on Parkinson’s changed I
realized if Parkinson’s was a person was
I’ve let them do this to me but I’ve let
them stop me from doing what I was doing
because I’m an incredibly stubborn
person and I think stubbornness is
actually another word for perseverance
if were honest and I thought
I would have fought it back but because
it’s not a person I’m letting it win
because I don’t know how to deal with it
and cuz it’s just too big it’s too big a
life thing to know how to deal with it
and how to work out what you’re going to
do with your life with this on your back
the whole time so I looked it the way
that I dealt with things previously
before you know smaller things and I
thought if I break this down into
smaller things so if it’s not about
Parkinson’s it’s about the 99 other
things for instance 99 works because
it’s kind of comedy but there’s probably
more than 99 if we’re honest if we break
that down into the things that annoy me
most day today about my life and about
that then it becomes not about
Parkinson’s it becomes 99 really
annoying things that I can actually try
and outwit somehow so let’s take the top
line flying flying is difficult when you
have Parkinson’s and suddenly it becomes
a bit of a nightmare because people are
constantly watching you to see whether
you look suspicious and I look
so I’ve tried to kind of combat that by
flying as much as I can looking we’re
looking really suspicious and just
dealing with it
but I realized it’s something that’s in
my head it’s something that actually I
am creating and I’m making myself feel
bad about this and I get to have
adventures abroad and you know I don’t
care what anyone else thinks timing I’m
always late to everything I was actually
here on time today which is the miracle
but I almost miss my train so could have
been could it be very bad I have to make
sure that I leave enough time for
everything I have to factor in that time
by leaving myself contingency I actually
can get to places on time and kind of
vaguely respectably dressed and things
like that
financially I have to get a lot of taxis
but actually I see them as a treat as a
luxury and it becomes part of my spend
that I’m happy to do children I don’t
know what’s going to happen in the
future but I do know that when I’m awake
at 2:00 a.m. because I can’t sleep it
would be great to have someone there to
keep me company who could annoy me as
much as I’d annoy them maybe I’ll just
get a pet or see catching things people
throw stuff to me all the time someone
threw one of those then speedball things
that me wants and it hit me in the head
and I just I kind of dodged it but I
felt embarrassed that I couldn’t catch
it I find telling people that you have
Parkinson’s is useful in a sort of
scenario where there are balls around
[Laughter]
bananas or fruit in general someone
actually messaged me with Parkinsons the
other day to say they successfully
peeled an orange I think that
celebration between each other is a
great thing that you should have Barb’s
and anything sort of heat-related and I
find my Parkinson’s actually makes Micah
and I have like a patch that I wear on
my leg and it’s metal backed and so
anything sort of heat related just burns
and burns and burns so bars are not my
friend anymore take showers I won’t go
through the rest of the line because
there’s a lot of things on here but my
point is suddenly if you tackle all
those little things that make your
day-to-day annoying you can out with a
lot of them there’s probably ones on
here I’m still waiting to take off it’s
like bingo if we’re honest I’m
constantly kind of trying to find ways
of coping with them but it suddenly
becomes lots of smaller things that you
can find ways to beat you can beaten
through sharing conversations with
people you can beaten through little
tactics or hacks you can beat them
through technology there’s kind of
technological ways you can beat these
things you can beat in through just
talking about them and being honest but
actually I find then it doesn’t become
one massive massive thing that you can’t
cope with it’s lots of smaller things
and as you take them off day to day you
may be just left for two or three that
oh the problem once and I was suggesting
that with anything that you have that is
a big deal and a big problem because the
minute you start not sweating the big
stuff the small stuff is so much easier
just to get why day to day and I was a
positive person before but I’m an
incredibly positive person now because I
have these little games of myself and it
makes life fun it makes life easier but
I think everyone has something they’re
coping with and actually being aware of
people coping with things it’s really
really important knowing that everyone
is struggling with small things and big
things day to day people are going about
their daily business the person that
pushes in front of you is you’re trying
to kind of get down into the Train or
the person that you know child is having
a meltdown when you’re trying to kind of
be quiet or have a phone
they’re all dealing with something
they’re all coping with something they
might you seem small might to them seem
big but life is just full of these
complex tiny little things that people
are dealing with and they can build up
into massive things I would say being
stubborn has actually saved me it’s made
my life something that I’m excited about
and that I’m positive about day to day
and I think I have my parents to thank
for that because they’re both incredibly
stubborn T and it made me fight back and
now when I say this I think people don’t
believe me but it’s the honest truth if
someone said to me you could take the
Parkinson’s away from your life right
now I’m sure I’d take it there was a
cure I’d take it but if I could go back
and not have been diagnosed then I’m not
100% sure that I would because person I
am today is because the Parkinson’s it
showed me what I can do it showed me how
to break stuff down into manageable
chunks so I never need this before it
made me realize the people that I had
around me were important and special and
looking out for me all the time and
sometimes you don’t know those things
unless something tests you and so I’m
glad to have Parkinson’s and I’m glad to
have these 99 plus things that bother me
every day because they’re there to test
me and to prove that I’m alive and if
you’re not living then you don’t have
these things bothering you day to day
it’s good if things are bothering you it
means you’re pushing yourself out of
your comfort zone so I’d love to talk to
anyone who has problems that they’d like
to break down because I love getting my
icon set out and breaking example people
and as a graphic designer caught this
was fun to me but I’m Emma I was
diagnosed with Parkinson’s at 29 and I’m
a better person for it thank you [Applause]