Parkinality columnist Julie Walker helps with Parkinson's UK educational film and joins World Parkinson's Day organising committee
The Indie's Parkinality columnist Julie Walker, of Bishop's Stortford, writes not about parking, but about living with Parkinson's disease in her 50s...
Readers will quickly realise that my area of expertise is limited to finding rhymes for neurodegenerative diseases rather than curing them.
From the day I was diagnosed I have been all about raising awareness. I will make anyone who is happy to listen aware of Parkinson's disease (PD) - and I'm sure a few who aren't. Friends quickly realise that unless they actually want an answer to the question 'How are you?' then they shouldn't ask me.
Therefore, when asked by Parkinson's UK to help them make a short film for educational purposes about the reality of living with PD, the Wise-ish Man and I were very happy to help.
We were hoping for Spike Milligan and Ginger Rogers to play each of us in our first film, but for two very valid reasons - one being that there is a danger audiences would just end up giggling at our foxtrot - we have had to make do with us playing ourselves.
Parkinson's UK has an education department which is currently working on updating its online information to inform healthcare professionals and care workers about what it's like to live with PD.
Parkinsons UK was also keen to capture on film the various motor symptoms associated with PD, particularly freezing. As you can imagine, this is incredibly difficult as the symptoms are both unreliable and unpredictable.
Normally, particularly when we are seeing other people or going out, we keep our fingers crossed that we have a brief window when we are both tip top. As protein interferes with the absorption of the tablets, we usually avoid too much of it to give the tablets the best chance of being absorbed.
For this short film, as most people judge books by their covers, we felt we needed to be seen at our worst. As a general rule, motor symptoms are (nearly) always particularly rubbish after 2pm and the Wise-ish Man (nearly) always freezes at the bottom of stairs. So the filming was scheduled for after lunch and the front steps were selected as a good area to catch the Wise-ish Man freezing.
Cameras were set up outside and the Wise-ish Man was filmed walking up the driveway and coming to the steps - you guessed it - not freezing, and negotiating the steps without a problem. They tried twice, but with it quickly getting dark we couldn't film any more.
We were then interviewed about a day in the life, when, you guessed it again, I was the best after lunch that I had been for ages. We are awaiting the first cut of the short film to view it.
Each year the Parkinson's community marks World Parkinson's Day on April 11, the birthday of English doctor James Parkinson (1755-1824) who published the first detailed description of the condition in 1817. Prior to this it had been known as the shaking palsy. PD has been around for well over 200 years and, in that time, there has been only one medication breakthrough in levodopa (synthetic dopamine) and still no cure.
I have joined the committee which organises the day and this year we are looking to light up as many buildings as possible blue. We are also people to submit poetry to mark the occasion.
So watch this space as more information will be forthcoming in future columns.
World Parkinson's Day
We might shuffle and shake
Whisper and whine
About this called PD
It's with us all of the time
We get some brief respite
Every now and then
When we briefly forget
Until it returns again
We want to raise awareness
To remove the stigma and fear
On World Parkinson's day
11th April each year
We are informing
We're not making a fuss
But please take a minute
To think about us
We are a person
Living in fear
On the inside
We are the same as we were last year
So don't judge this book by its cover
Think about what you can do
To spread awareness
To light up the town blue.
With the dark, cold nights upon us, here are a couple of useful websites for information about help and advice during the cold weather. Tips from Parkinson's UK about keeping safe and warm can be found at www.parkinsons.org.uk/information-and-support/keeping-well-winter while Citizens Advice has lots of useful information about help with energy costs at www.citizensadvice.org.uk/consumer/energy/energy-supply.
I hope readers had a very merry Christmas and I wish you a happy new year.
