The Dark Knight Rices

Where Emma discusses her possessed hand

I have no idea what is happening here but it is a little like the inside of my head.

Welcome and hello my lovelies, thank you for your replies to last week’s letter.

Also, published today! Love in the Time of Parkinson’s

✍︎

As sure as Batman is dark and brooding, it feels to me as if I have had Parkinson’s forever.

There are two factors at play. One, I can’t remember a time when I wasn’t in pain, stiff or had a good night’s sleep. Two, and this is most significant, I can trace back to signs that Mr P was lurking to a very long time ago.

I wonder how many of you reading this feel the same. There seems to be some research underway on whether we are born with PD.

Thea Snow @theasnow

Sometimes I look at old videos/photos of myself and I think, “that’s before I had Parkinson’s disease.” But the truth is, I’ve always had it - it’s always been a part of me. It’s just that it was invisible, and it’s now visible. I guess, in a way, PD is part of my personal grout.

Having a chronic illness does turn us into the worst bores! Parkinson’s this, Parky that - it’s not all about the disease…only it bloody is! It’s so time-consuming obsessing over every twang, twinge and blip. Between trying to work out if it’s my symptoms or simply getting older, I have been thinking about the first indicators that I had Parkinson’s.

For me, I can pinpoint a time when I began to experience leg pain and my right-hand contortion. In 2010 I was under considerable stress: running a business, bringing up toddlers, managing a marriage break up. My salvation during this time was a therapeutic group that met weekly. We practised reiki, theta healing and were fabulous support of kick-ass women. (And, yes, there was often wine involved)

It was all sunshine and roses until the possessed hand joined the party…

As soon as I started to relax and let go a little my hand would contort into fascinating shapes and angles and then stick in position. Ouch. This ‘clawing’ is pretty common it turns out but I knew nothing about Parkinson’s in those halcyon days. Seems unimaginable that there was a time where PD wasn’t on my radar. I didn’t even know anyone with it until I was diagnosed!

But I think my symptoms go back further. Fatigue, nightmares, pain have all featured through my teen years. Fairly prominent cognitive twists and certain times of hallucinations. Even without dabbling in any mind-altering drugs!

Not that it really matters. I still have the ‘possessed hand’, although it doesn’t come out to play so often, as I manage my PD stress levels. We are here now, dealing with this stuff today. Tell me about if your symptoms pre-date your diagnosis. (Hit reply & share your stories)

With Love

Emma xxx