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All of the ways, big and small, that Parkinson's disease affects everyday life





The Indie's Parkinality columnist Julie Walker, of Bishop's Stortford, writes not about parking, but about living with Parkinson's disease in her 50s...

I have written more than 50,000 words - really - about Parkinson's disease (PD) in my quest to jazz up disease.

Everyday life is the real problem faced by people with PD, i.e. those activities which don't actually matter, such as wiping down the kitchen surface. Not an immediate problem, but it's not until you can't do it that you really want to.

So here goes with column number 74 and a few examples of things everyone takes for granted. Hopefully this column will sneak a little more awareness into your brain.

Panda pandemonium

To all you in the cleanse, tone and moisturise brigade, forgive me for distracting you from your routine but I'd advise you to look away now if you have a nervous disposition.

I often don't take my make-up off at the end of the day. Not because I am lazy nor (usually) because I have had a few too many sherbets. But because, quite simply, I physically can't as my fingers are rigid.

Consequently, after a night of interrupted slumber I often awake looking like a panda. I am afraid I have been known to reconfigure last night's panda eyes into something resembling a halfway human. Which is often safer than jousting with the mascara wand.

Menopause mayhem

To all of the women going through the menopause, imagine having double the symptoms. Symptoms such as brain fog, sweating and mood swings are also associated with PD, resulting in a match not made in heaven.

Not much research has gone into premenopausal women with PD because we are a very niche group.

Writing readability

As with everything to do with PD, things become smaller, including writing. So my once-massive 1980s balloon writing has become an indecipherable insect scribble.

I challenge even the most competent doctor's secretary to work out my diary entries and shopping lists.

Thank goodness I can, usually, still type. I have tried dictation software, but have found that it is selective in its understanding. So it will ignore "Dear Sir, thank you for your letter" and instead type "insert preferred expletive".

Scent sensation

This is a health and safety announcement - if you can smell one of us, good or bad, please let us know.

Parkinality columnist Julie Walker and her partner Andy 'The Wise-ish Man' Johnson (62508109)
Parkinality columnist Julie Walker and her partner Andy 'The Wise-ish Man' Johnson (62508109)

Feel free to announce politely "Crikey, you smell slightly inclement" or "You aren't supposed to bathe in the eau de Cologne" as people with PD's sense of smell is intermittent. Sometimes I can smell and sometimes I can't, which is in direct correlation with sometimes I smell and sometimes I don't.

DIY disaster

Ever tried to put up shelves or carry out any form of DIY with PD? If you think about it, this is a no-brainer.

DIY x tremor, balance issues and dexterity problems + tools = a PD disaster.

Banter with the boys

Ever tried to hold your own in a post-match banter session with PD? In the same way that movements become smaller and slower, speech becomes quieter and mouth movements smaller.

So the weekly post-match meet-up with the boys in the boozer becomes difficult. The person with PD could quickly become sidelined in the post-match banter as their, often hilarious, asides become lost in a PD whisper.

Outfit options

Ever dressed according to whether you can lace up your DMs rather than the weather? Lacing up DMs is fiddly. If you can't lace up your boots then you would find it difficult to button up the thick winter jumper with the complicated buttons.

You will have to wear several thinner pullovers and your slip-on loafers instead.

Toothbrush trouble

I don't brush my teeth at a socially acceptable time and, sorry, sometimes I only brush my teeth once a day.

It is no exaggeration to say that PD affects every aspect of every day. Many of the symptoms are invisible and my huge worry is that these invisible symptoms will, in turn, make me invisible.

P.S. Thank you to everyone who has bought tickets for the quiz night at the Wheatsheaf pub on Thursday April 6. Amazingly it is almost sold out, so thank you for your support.



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