Restless egg syndrome...

Where Emma is restless & digs up an oldie

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It’s a beautiful spring day here and I am restless so writing hasn’t come easily. So I have dredged up a piece I wrote 3 years ago. Some things have changed, much has not. I hope you enjoy.

I’m a 44-year-old woman. Not in bad shape but two kids and a lot of life has certainly made its presence felt. I collect wrinkles for fun these days; this one’s for merlot, this for sunburn circa 1992, this for teenagers stressing me out. Thank god for big sunglasses and a good foundation.

When I was diagnosed with Parkinson’s Disease two years ago, age hit me. I’ve never minded growing older, inevitability doesn’t frighten me. I always assumed I’d age into a creative eccentric: slightly mad, not giving a damn in my high heels and red lipstick. Red lipstick is now a terrifying item in my trembling hands, it becomes a gash of Punchinello proportions. Staggering on heels which threaten to send me headlong into the laps of unsuspecting innocents. I think my glamour days are gone.

Ironically, they call Parkinson’s a ‘designer disease’. A witticism they titter out as they deliver your prognosis. Ostensibly it’s because no two people have the same symptoms, in truth its because they don’t know how to manage and treat it. Currently, it’s incurable.

The last years have been a series of ups and downs. Perhaps of my own making; I refuse medication at this stage. Being bound by side affects more frustrating than the actual disease isn’t the freedom I am looking for. With fairly mild symptoms that is my privilege.

I can feel the subtle ripple of the full-body shakes which often define my bad days. Some days I’m shaking so hard the bed quivers and the blankets anthropomorphically dancing a jig. Somehow I still have to perform your life when this happening. It can lead to some interesting results. My fitness watch tracker determines that I ‘jog’ several kilometres more on those days. Hey it's all steps, right?

The toughest part is the pain; no one told me about the pain. Very few articles, medical studies or professionals discuss the pain. But one quick trawl through the forums reveals a torrent of anecdotal evidence. I experience it as a malaised ache peppered with shooting cramps. The cramps aren’t the type you walk off, stretch out or rub warm. No these are vice grips from an unseen spectre; cold, biting, angry. Perhaps in another two years, I will be begging for medication and relief. In the meantime, I occupy my time de-stressing and using exercise to improve my symptoms.

One of those keep-fit activities is pack-rafting. A pack raft is an inflatable kayak. This beast is no glorified lilo; the adventure travellers for whom it was developed for need a robust, stable and lightweight boat. Packable into a rucksack, simple to inflate and a lot of fun! We use ours to meander down our local river. A merry, sparkling waterway; cutting through spectacular scenery. Activities of this type need specialist kit. Enter the wetsuit.

Now it fair to acknowledge that getting into a wetsuit is like being born in reverse. Simply put they are skin tight and require a bit of work to get them properly placed. It helps considerably if you have two smoothly functioning hands with good grip. When you have Parkinson’s it’s similar to python wrestling whilst trampolining. Getting into the thing involves jumping, squeezing, wriggling, falling (lots of falling), stretching, gasping, more jumping and finally, right leg on...This process can take time. It’s often accompanied by my loving children snapping compromising photos and sharing unhelpful advice, whilst laughing hysterically.

Laughter turns out is indeed ‘best medicine’. The more I laugh about the ludicrous scenarios Parkinson’s brings out in me the more I relax. It is too easy to worry about whether people think I’m drunk as I weave a stutter path along the street, or when they stare at my shaking hands. Judgement doesn’t help anyone and worry certainly makes Parkinson’s worse. My symptoms are improved by being happy and so are my friends and family.

Most of my undertakings these days are a bit of a commotion. I have to take my time, plan and avoid white clothes when drinking red wine. Generally, these are small changes and its fair to say I definitely lived at a frenetic pace before Parkinson’s. Slow living isn’t so bad.

Things in Parkison’s this week:

• Helpful video for dystonia in the foot. I use this take on my forearms as well…it can help on those days when you really need your feet etc to work.

• A brilliant look at some of the untalked-about aspects of Parkinson’s.

• A lovely read about football and Parkinson’s from one of my favourite bloggers.