There's a temptation, which a lot of people fall into
Of trying to ignore it and battle on
And struggle with things that you could do before
It's more effective if you can find ways to work around Parkinson's
And take it away from the centre of your life
Multi-tasking is very difficult for people with Parkinson's
I think it's difficult for a lot of people
But what I've found myself saying is like
"I'm just doing this right now"
So if was tying my shoe laces
And somebody was giving me
information about another part of the day
I'd say, "I'm just tying my shoelaces"
"and then we can talk about that"
"Because really now I need to concentrate"
Speaking especially, your voice is dropping
So now I heard from my Parkinson's nurse
What you have to do is think loud
I never thought of that
You have to wait on your medication kicking in
And there are days when it takes slightly longer to work than others
Or you have completely off days where it just doesn't work
Challenge yourself to work around it
I'm an inveterate planner
I plan a lot
I make a lot of lists
I do things in advance and I love doing them
And I think all those things help
We used to go to lots of parties for Diwali and things
But nowadays I avoid going to these late parties
But still I go 50 percent of the time
On the whole I try not to cancel plans
Because I think that actually nine times out of 10
If you continue to do what you're going to do anyway you feel better
There are times though when I just think
actually to go out is just one thing too many
So I make an excuse and I don't go
But not very often
I went to Australia with some very good friends
Stayed with them for a month
It was an action-filled calendar
and after the first week I was exhausted
I just had to say "look you'll have to go a bit slower"
"because I'm unable to continue at this pace"
Struggle on if you're OK to do it
But not if you've got to the point of breaking
You have to say "call the cavalry"
It's OK you can say that
I go home I kinda re-energise myself
I see my girlfriends and I see my family and I see my mum
My mum helps me with her
I get re-energised and then I come back
Christopher is very good at picking up the vibes
He knows when I'm having a bad day
And I'm getting better at telling him anyway
But to begin with I wasn't because
I thought I've got to cope with this on my own
You don't have to cope with it on your own
It's tempting for people to think that there's nothing that can be done
And that inevitably their quality of life
is going to go downhill
There is a great deal that they can do to improve their wellbeing
I guess I am semi-retired in that technical sense
but I haven't stopped living yet
I asked if I could space the two days over the week
That break in the middle is quite important
so that I can keep going
I don't want to wear myself out too soon
I'm a police officer
Work have been fabulous
I'm still working
When I was diagnosed with Parkinson's
I went and told my management about the illness
I said I want to retire
I was told, "no it's only a condition"
"It takes a long time to take effect"
"We can't let you go, carry on"
"We'll look after you"
and they did look after me and I carried on
Legally you don't have to tell your employer
But I would say there are benefits to think about whether you
tell them or not but you'll know your employer
as to whether that will be a sensible thing for you or not
Some companies make every adjustment they can
And support people to continue working as much as they can
to go part-time gradually
Other organisations don't want to know
don't make any adjustment
And coping with that, it helps greatly
if you can get support from a group like Parkinson's UK
I think it's good to get involved with some other activity
where there are Parkinson's people
But not only that, try to go to other things
where you are just a person enjoying a group, doing something
What I get from volunteering is
that feeling of helping others
I do that in order to round the houses help me really
I did want to get involved with with some other Parkinson's things
I try and help out at the support groups as much as possible
They were looking for someone to take the newsletter on
at the Halifax Parkinson's branch
It's something I can do, I can use a computer
I can illustrate, I can write
It's quite a lot of work
But I can do it from home
and if I'm up in the night I'll do a little bit
Or if I'm up up early I'll do some or late at night
I can just do it when I have the energy to do it
and when I don't I don't
Having been self-employed and quite happy to
deal with money and bank accounts and VAT
and anything else I decided that I'd put my name down for the treasurer
I think it's important to share skills
I'm never happier than when I'm with other people
All of that that makes me feel useful
There's a reason for me
I think we're here to be useful to people
If your life needs a purpose it's to be useful
I'm a vicar by trade
Right up until the day I die, I hope to be able to
still put people in touch with each other
And still make sure they can answer their own questions
We're not just passive people
being handed lots of information
We're actually creating our own community
It just makes me feel I belong to something
And just belonging to something
and being seen and being recognised
makes all the difference
The amount of helped that I've been given
through Parkinson's UK is priceless
If I can do a small amount to help someone
in a similar situation as myself then so be it
The reason I'm interested in Parkinson's research is
so that they can find a cure
or improve on the medication to make life easier for people who suffer from it
My aim is to help others
Instead of going to school every day I do something on the computer
I do some websites
I do talks practically once a month all over the UK
So it's completely changed my life
It's been much more exciting
Last October I decided I wanted to do something
First thing I thought
"Right I'm going to jump out of an aeroplane"
I just wanted to prove a point more than anything
Just because I've been diagnosed doesn't mean I've stopped living
and if I could do it then anybody could
if they put their mind to it
What was even better was I raised £2,000 for doing it
Which was brilliant
If you had told me four years ago I'd be sitting on a park bench
discussing topics
in front of a camera
let alone face to face I'd have said "no way!"
"Not on this earth", and here we are
We need to have a voice
We'll never be able to speak and stand up and make a lot of noise
if there's not enough voices to shout out in the first place
Get involved, get involved
Coming to terms with a diagnosis of Parkinson's is pretty traumatic
Having Parkinson's is something I don't want
But I've met unbelievable friends
and I've had fantastic opportunities to do things that I probably would have never done
I think you find out in time what kind of person you are with Parkinson's
Nobody knows how this illness is going to progress
You don't know what it's gonna look like
but you know what today looks like
My philosophy on life these days is
"every day's a best knicker's day"
Take each day as it comes
Every day is going to be good day, hopefully
My focus is not on Parkinson's, it's on living
Sometimes it's frustrating
I'm not going to allow it to take over me
And don't wait for someone to come along and help you
Go out and help yourself
Don't let this thing ruin your life
Don't wait to live your life, live it now
Keep positive
Be positive, live today
I might have Parkinson's but the Parkinson's doesn't have me