Parkinality columnist Julie Walker’s A-Z of living with Parkinson’s: D is for driving, diagnosis, discussion, debate and dodgems
Parkinality columnist Julie Walker, 57, of Bishop’s Stortford, writes about living with Parkinson’s disease. In the fourth part of her A to Z of PD, Julie tackles the letter D.
DRIVING & DVLA
“Dora, did you see that twitchy woman attempting to park straight?” / “Ooh yes, Delores, she was a bit all over the place. Should she really be driving?”
As soon as I was diagnosed with Parkinson’s disease, the DVLA (Driver and Vehicle Licensing Agency) put me on a three-year licence. This means that the DVLA will check with your medical professionals every three years to ascertain whether you are safe to continue driving.
I took the decision to stop driving about seven years ago. I wanted to make it myself rather than risk overhearing my driving being discussed in a supermarket.
DIAGNOSIS DAY
I had known something was wrong prior to diagnosis. I have subsequently learnt that by the time symptoms became apparent, I would have had Parkinson’s for a few years and lost 80% of my brain’s dopamine.
My symptoms were random and intermittent. My left hand sometimes couldn’t hold a fork properly and sometimes stopped touch typing. Occasionally I stopped being able to swim with my left leg.
The doctor referred me for a course of physiotherapy, suggesting it was a trapped nerve. After six months with no progress to speak off, I saw a neurosurgeon. After an inconclusive MRI scan, I saw a neurologist.
After performing what I can only describe as a drink-drive test, among other simple tests, I had to walk in a straight line (I dragged my left foot) and perform what I ‘affectionately’ call the tweety bird test with my hands (my left hand was slower than my right). No bloods, no super-scientific tests required (there is a scan, but the neurologist said it wasn’t necessary).
The neurologist turned to me and said: “You have Parkinson’s disease.”
DISCUSSION
My aim in writing this column is not to moan (honestly), it is not to complain (I heard that). It is to start discussion and raise awareness of Parkinson’s disease.
Discussion creates awareness. Some people say that awareness is a waste of time and that what we need is action. We do need action, however without awareness we won’t get action.
Confused? If you are not aware of something, then how can you be expected to raise money for it or empathise with people living with it? How can the clever people understand the urgency for a cure? How and why would volunteers set up a support group for an anonymous condition they had never heard of?
I will continue to raise awareness and incite discussion until this ‘thing’ is cured and is eradicated from the face of the Earth – you have been warned.
DEBATE
On May 1, I watched the first ever Parliamentary debate on Parkinson’s. The MP for Hertford and Stortford, Josh Dean, spoke about his experience of the disease through friends and relatives.
To get real change, Parkinson’s needs to be debated in Parliament. This is key for, among other priorities, obtaining Government funding for research, changing rules surrounding prescription charges and changes in the way Parkinson’s appointments are managed.
Some of you might be aware of the Movers and Shakers podcast, which is hosted by six high-profile people who live with Parkinson’s, including former Newsnight host Jeremy Paxman, The Vicar of Dibley co-writer Paul Mayhew Archer and retired High Court judge Sir Nicholas Mostyn. They are asking for 100,000 signatures by September for a debate on the Parky Charter in Parliament.
Click on the following link for more information about the charter and to sign the petition (not forgetting to confirm your email address) https://cureparkinsons.org.uk/2025/03/support-the-movers-shakers-parky-charter-parliamentary-petition/.
DODGEMS
A couple of months after my DBS (deep brain stimulation) surgery – which involves implanting electrodes into specific areas of the brain and connecting them to a pulse generator, similar to a pacemaker, implanted under the skin, which delivers electrical stimulation to modulate brain activity and alleviate symptoms – The Wise(ish) Man and I went on a delightful day trip to the seaside.
After taking part in our traditional (unofficial) ice cream wearing contest, we shuffled and meandered to the pier. Queuing for the dogems, I suddenly had a meltdown.
Who was I fooling? I suddenly remembered the traditional name for the dodgems is bumper cars. I irrationally worried about Lavinia (my tiny imaginary brain organiser) and the DBS electrodes which had been installed in my brain being affected by the inevitable bumping.
After a panicky discussion, The Wise(ish) Man decided it wasn’t worth his stress levels increasing with my inevitable worrying. I turned to the young lad queuing behind us, saying he could have our space as we weren’t going on the dodgems. He replied: “You’re too old to go on the dodgems anyway.” Cheek!
NB: Check with your neurologist if you are worried about anything at all, don’t waste time stressing – ask the question.
STOP PRESS: Thank you to everyone who has purchased my poetry book of Parkinson’s odes. I have so far raised over £500, which will be divided between Cure Parkinson’s and Parkinson’s UK. For a suggested donation of £5 they are still available from the Indie office at 7 Palmers Lane.
