Parkinality columnist Julie Walker’s A-Z of living with Parkinson’s: C is for control, charity, carer and cabs

Parkinality columnist Julie Walker, 57, of Bishop’s Stortford, writes about living with Parkinson’s disease. In the third part of her A to Zee of Parkinson’s disease, Julie tackles the letter C.

CONTROL

Imagine you are walking down the street when you spot a young (heavy on the ‘ish’) lady walking towards you who appears to be auditioning to join the Ministry of Silly Walks (ask an over-55). You smile politely at the lady. She responds with the most awful gurning expression, her mouth shaping itself into an odd, cod-like pout and her nose scrunching into a pig-like snout.

The random walking movements are due to a side effect of the Parkinson’s disease (PD) medication called dyskinesia. The contorting facial expression is due to another condition called dystonia. When these kick off, my movements are frustratingly outside my control. It is like an invisible force has taken over my muscles. Michael J Fox (a fellow PD sufferer) likens it to having an invisible toddler clambering over you, pulling at your face, arms and legs.

This is a case of never judging a book by its cover. On the outside I might appear to be trundling along the road, gurning like a giraffe in a tumble dryer (which on no account should be attempted). But on the inside I am the height of ladylike sophistication (unless I am not).

CHARITY AND (ONE DAY) A CURE

Charities are amazing organisations. They are full of people passionate about the cause they are supporting. Whether that be cats or Crohn’s disease.

Parkinson’s UK is one of the charities which support people with PD. It does this through an excellent helpline, giving advice on subjects from benefits and transport to medication and exercise. It also invests in research to one day cure PD.

Cure Parkinson’s is a much smaller, but equally as vital organisation. It is focused on finding a cure.

For this year’s Parkinson’s Awareness Month, I have put together a compilation of my odes about living with PD. I am selling the book for a suggested donation of £5. All the money will be split between the two charities. Copies can be purchased from the Indie office or you can stop me and buy one. At the time of writing I have already raised over £400.

CARER

Wearing a lanyard, you brush your father’s teeth and get him ready for the day. You take off the lanyard and get yourself dressed. You then put on the lanyard again and take your father out for his daily walk. You proceed to take the lanyard on and off throughout the day, one minute a carer and the next a daughter.

However, it doesn’t stop at night. At 2am, again wearing the lanyard, you help your father turn over in bed. Taking the lanyard off, you try to get some sleep yourself.

This routine never lets up, repeating itself over and over again, day in and day out.

Which raises the question, when do friends and family members step over the invisible line and become a carer? Pre diagnosis I thought a carer was someone in a uniform wearing a lanyard, who was paid to come into your home. It is a steep learning curve to realise that friends and relatives are as likely to become unpaid carers. When does someone go from simply helping out by emptying the dishwasher and putting the rubbish out, to brushing teeth and helping with personal care?

I call our carer an invisible friend. Currently she is there in the background, ready to help at any time and make my life safer and more bearable. This could be something as simple as carrying a coffee across the room, to helping me cross the road.

CROSSING THINGS OFF

The Wise(ish) Man, in one of his wise moments, said a degenerative PD diagnosis means you are constantly crossing things off. For example, I decided long ago that it was safer if I gave up driving. I will have to give up typing as it is becoming more difficult to control my hands.

However, the saddest day will be when I can no longer wiggle my nose, a la Bewitched (really).

CABS

We keep the cabs of the town busy. We probably hold the unofficial record for the shortest taxi ride. Due to both the Wise(ish) Man and I being unofficial members of the Ministry of Silly Walks, it will be an excellent day when we do a runner from a cab. Stop right there, don’t worry, we are still law abiding citizens.

However, just in case you spot two people zig-zagging down the high street at a snail’s pace, pursued by a cab driver leisurely catching them up, may I be so bold as to suggest that, before they both seize up and come to a PD-induced standstill, you stand back and give them a round of applause.