Parkinality columnist Julie Walker, of Bishop’s Stortford, writes about living with Parkinson’s disease in her 50s
What do The Wise(ish) Man and I have in common with foxes and bats? Well, we definitely don’t spend our days hanging upside down in caves and prefer to eat in a café rather than forage in the bins out the back. Give up? We are all nocturnal creatures.
I have been diagnosed with the (currently) incurable degenerative neurological condition Parkinson’s disease (PD) for almost 12 years and The Wise(ish) Man for almost 19. I also live with Crohn’s and The Wise(ish) Man with arthritis. We, like others living with chronic conditions, spend our lives managing life 24/7 with no break for good behaviour.
So how does living with PD make us nocturnal? Allow me to explain.
Obviously, we do go out during daylight hours, although, admittedly, it is mainly to medical appointments. We both have regular neurological appointments. I have fortnightly Crohn’s injections and, more recently, ultrasound, colonoscopy and CT scans. The Wise-ish Man has scans for arthritis. This is along with ‘normal’ medical appointments and blood tests. It is an unfunny joke that most of our dates are in medical waiting rooms.
Each morning we all wake not knowing what the day will bring – and we are no exception. Will we be able to brush our teeth or do up our buttons? Will we be able to eat our lunch without wearing it? Will we be able to peg the washing out or will dexterity and mobility problems interfere? Will we be ready for the day before 5pm?
We, in the developed world, are fortunate to have many choices in life, two of which are hiding away or getting out there and living our lives as best that we can. We choose the latter.
Bishop’s Stortford has a thriving pub community where we meet up with friends, chat and, hopefully, release some dopamine (dopamine is what is lacking in the brains of people with PD). Many of our best evenings are impromptu, partly because we are indecisive but mainly because we never know how PD will affect us.
The other night was one such evening. A lovely meal and then a dilemma: should we call a cab and go straight home or stay out? As we were both feeling quite low, mobility was rubbish and it was only 7pm, we decided to stay out. We would then, hopefully, see some friends and feel a bit better.
Onlookers seeing us moving around Bishop’s Stortford could be forgiven for judging a book by its cover. They would see a stooped, smartly dressed gentleman struggling with a mobility walker, accompanied by a younger, brightly dressed woman either scuttling ahead or shuffling behind, flailing a diamanté walking stick.
Both would be attempting to stay upright and move forwards, her usually muttering the words to Wham Rap! (Enjoy What You Do) and him counting to himself. We make an interesting couple.
That particular evening turned into one of those impromptu, dopamine-producing evenings which make the long difficult days, almost, worthwhile.
The Half Moon is undergoing a bit of a resurgence, with Ben and Jonny (not to be confused with the ice cream) introducing many different-themed evenings. That night we happened upon Becs DJ Oi Oi. A brilliant singer and a DJ, their song list was upbeat and dopamine-inducing.
The Wise(ish) Man, ever the shrinking violet, put himself forward to sing a duet. The evening took an entertaining turn as he joined Becs and sang Elton John’s Don’t Let The Sun Go Down On Me. A great rendition, appreciated by the audience, it was a brilliant evening. Exhausted, we called a taxi and returned home.
Despite both The Wise(ish) Man and I having had deep brain stimulation (DBS) surgery, it is not a cure and PD still affects everything we do.
A great evening out with friends does us good, makes us feel more positive and helps us forget, briefly, about the difficult times. Life is good(ish).