Parkinality columnist Julie Walker’s A-Z of living with Parkinson’s disease: I is for isolated, impulsive, illness and impatience
Parkinality columnist Julie Walker, 57, of Bishop’s Stortford, writes about living with Parkinson’s disease (PD). In the latest part of her A to Z of PD, Julie covers the letter I.
Apologies for the delay in writing this column. To be honest, it has been one of the most difficult to write for a while, both physically and emotionally.
Physically because my failing dexterity is making typing incredibly challenging. Touch typing used to be my ‘super’ skill, but it is quickly turning into my ‘poor’ power.
What’s that? Dictation software? If you can find a machine which doesn’t pick up expletives, then send it in my direction.
And emotionally because symptoms are getting seriously awful. The usual subtle humour is lacking from this column. I have one joke in my repertoire and I will endeavour to secrete it into this column. See if you can spot it.
Continuing with the A to Zee of Parkinson’s disease (PD), we come to the letter I.
INDEPENDENCE DAY
Unlike the film, my life is not an action-packed science fiction film about an alien invasion. Which proffers the question, what is orange and sounds like a parrot?
Like otters, human beings start life dependent on adults, gradually learning to strut, jive, iron, knit and do interpretive dance.
PD is gradually stealing the skills I so diligently learnt when I was an infant. I am becoming more and more reliant on the temporary loan of others’ opposable thumbs and sassy walking skills to complete tasks.
ISOLATED AND IGNORED ON YOUR PD ISLAND
No man is an island. Apart from if you have advancing PD.
Picture the scene. With your mobility walker stranded at the hostelry door, you stagger across the floor, clinging on to various unstable shoulders for support.
Newcomers assume you are inebriated. However, friends who are in the know notice your unsteady gait and evict an unsuspecting local from their chair. You have no alternative but to sit down, whilst everyone else is leaning against the bar.
Despite being surrounded by friends, you feel isolated and ignored, unable to make your failing voice heard in the pub banter. Sipping on your brandy top, ordered in error, you begin worrying about how on earth you are going to quickly get to the powder room, navigating the lounging canines, humans, chair legs and handbags.
IMPULSIVE (AND COMPULSIVE) BEHAVIOUR
If someone described themselves as impulsive I would think of that person as being fun and spontaneous. However, if someone living with PD, taking a medication known as an agonist, describes themselves as impulsive, alarm bells ring.
Now for the science bit - remembering I am a middle-aged woman, I am neither a scientist or a medical professional. Please seek medical advice if you notice changes in behaviour in yourself or a friend or relative.
Impulsive behaviour in PD terms is not just impulsively purchasing a lilac skirt to cheer yourself up on a drizzly day in December, nor is it having one impulsive flutter on the Grand National.
It is impulsively buying clothes or gambling until you are literally bankrupt. This could quickly spiral into a repetitive circle of compulsive behaviour. At its most extreme, it has been known to cause relationships to break up and people to lose their homes.
I must stress this doesn’t happen to everyone. It is taken seriously by medical professionals. PD medication is powerful, which affects the brain. Any changes in behaviour must be reported to your medical professional. It is also extremely important that you do not change or stop medication unless under the supervision of your neurologist.
ILLNESS
When I was first diagnosed, a nurse said to me: “You are not ill, you have a condition which needs to be managed.”
I suppose this was meant to make me feel better, but it actually confused me. In my mind, ill means taking medication (I am), seeing a medical professional (I do) and your body doesn’t work properly (it doesn’t).
Living with PD for 14 years, I now understand the statement. I have to live with PD. I can choose to sit and wait for PD to take over, or I can do all that I can to live well with this disease.
I spend half an hour every three months with my neurologist, the other 2,015 and a half hours I have to manage it myself.
IMPATIENCE
As PD progresses and I become slower, I am discovering that patience is not a virtue I possess.
ICE CREAM
After all those depressing I’s, I recommend a bit of ice cream and watching The IT crowd for some light relief.
Carrot.