Bishop's Stortford resident and Parkinality columnist Julie Walker's video showing how Parkinson's disease affects everyday tasks
Dance, music, laughter, walking backwards, karaoke, oh and around 25 tablets, help me to manage Parkinson's disease (PD).
I am now worried that I've taken my analogies too far and some readers think I ride a pink unicorn in a sparkly musical. So to accompany this column I have made a short film, under two minutes, which actually shows PD interfering with normal everyday activities and not a unicorn in sight. This is factual, not for sympathy.
PD has introduced lots of new words to my life including dyskinesia and dystonia, which are both debilitating and difficult to describe. All of this due to a lack of dopamine. I see a theme emerging – they are all dull.
I am also guilty of making up words that aren't in the dictionary…yet. Speat is my made up word meaning to repeatedly self-pity, or feel sorry for myself and have a good moan (you have been warned).
I have several different states which change throughout the day. If you see me when my medications are 'on' (i.e. working), then I am tip top and normal. Frozen, I look like I have the 'ump', ,y face is not very animated and I'm usually still and quiet. Dyskinesia usually gets a reaction as I over move, or dystonia when my feet twist and clench.
As my outer façade often hides my real emotions, it has been suggested that I wear a tabard with a changing emotional status. So that, for example, when my face goes into a distorted dyskinetic PD gurn, the tabard flashes up 'smiling on the inside'. I am not sure that would make me feel less self-conscious, or make passers-by less likely to cross the street.
The other day I froze, mid laugh, as if hit by a freeze-o-maker. Swoosh vroom and I am a freeze frame. It would be funny, if it was. The other evening, walking out of the pub after a soda and lime and a bag of ordinary crisps, I almost fell in the road when the dyskinesia hit me. Then there are my normal moments when I swish around feeling invincible. To add insult to injury, the non-motor symptoms seem to switch as quickly. So apathetic to warp speed, from happy to tearful.
You will be able to watch my short film on the Indie website. I will give a few spoilers - there are no car chases, just my toes involuntarily clenched and me trying to shop on two separate occasions, one flailing and one freezing up.
Just a reminder - I am not choreographing these movements, they are outside my control. It is PD interfering with the messages my brain is trying to send to my body to move. Dyskinesia feels quite surreal, like an uncontrollable rolling motion. Seeing it on film shocked me. If you want to see, rather than imagine, some of the symptoms have a look. If you don't, then don't.
If you watch my little video you are authorised to watch humorous cat videos on YouTube as some light relief.
This month the wise(ish) man and I went along to The Cure Parkinson's Trust (CPT) research lecture. Their mission statement is: "The CPT is the only organisation in the UK solely dedicated to finding a cure for Parkinson's. Founded in 2005 by four people living with the condition, CPT takes a patient-centric approach to funding innovative projects and inspirational scientists to modify the progression of Parkinson's and to find a cure. At CPT we believe that we are closer than ever to delivering treatments that for the first time will slow, stop or even reverse the progression of the disease."
Researchers spoke about repurposing drugs. These are existing medications already used to treat other conditions. These would bypass several years of testing as the medical professionals already know they are safe. They can go straight to testing on whether they can be used for Parkinson's disease. This means they are cheaper and quicker to get to market.
Attending days like these makes me feel part of a community and I know that dedicated people are working tirelessly for a cure.
I must 'dash' - Princess Sparkle needs feeding.
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