Use the forks, Luke 🌌🔫💪🏻

Where Emma answers your questions.

Hello and welcome to the new folks here. Not sure what this is all about? You could start here:

Issues?!

Today’s letter is in response to this note yesterday. There have been quite a few questions on similar themes so I have mashed them together.

Lots of you have asked me what were my first signs of Parkinson’s

Hindsight tells me that the signs were there for years possibly even back into my childhood. Fatigue, joint and muscle pain, nightmares and anxiety through my teens that I now know are parky-ish but had no idea then!

In 2010 I started getting a strange pain in my right leg which was a tremor with a massive dose of dystonia. Progressively I started showing more and more symptoms: mainly fatigue, loss of motivation, falls, and general balance issues but it wasn’t until 2017 I had a proper diagnosis. I was 42 years old.

This does pose the question of whether Parkinson’s is with us possibly from birth. I do want to state that no one else in my family has ever had it, to my knowledge.

(If you want to know more about the impact of my diagnosis consider popping over to Tumbled…my story of romance & Parkinson’s - a story in progress! Or for a really quick read - here)

What about the “mental side” of Parkinson’s? Anxiety, depression, demotivation, lack of focus and apathy?

A whopping 25 of you asked something along these lines! And boy, do I hear you?!

This is the area of neglect when talking about PD. (I know, I know ‘mental health’ is a dirty word across the board)

Let’s start with depression. Potentially the most medically treatable of the above listed. It is acknowledged that the changes in our brain chemistry can provoke depression in PD. However, anecdotally I’m hearing that it is hardly ever addressed. Why? There are studies suggesting that depression can intensify our symptoms and of course, there is the fact that it is fucking horrible all. on. it’s. own! The solution? Harass your medical team. If only I had the motivation…

Fatigue and apathy are additional gifts from our warped brain juice. I don’t know about you but getting up and vaguely accomplishing my daily tasks is Herculean. Friends and family look at me aghast when I try to explain that I just can’t move forward to hassle the system into caring for me more. When you don’t have the dopamine you can’t even ‘fake it ‘til you make it’. That’s sort of the point - the tank is empty.

Empty is sort of how I feel much of the time. Wrung out. Chatting to folk recently I think this is one aspect non-Parkinson’s folk can relate to. Given the chaos and pain of the last few years, most people are feeling ‘like butter spread too thinly over bread’. This stretched feeling leads to a lack of focus and butterflying of emotions. Ultimately leading to a lack of achievement and subsequent depression or at least disappointment.

Expectations of ourselves to be better and the anxiety that we can’t even begin to be like our old selves is a real kicker. The circling shark of the anxious mind wreaks havoc with the body. Shaking it into pain, rigidity and exhaustion and that’s before you have gotten out of bed. I can’t differentiate between insomnia leading to anxiety or anxiety causing the insomnia. To be honest, I don’t care. I want the world to stop spinning me into that whirlpool…you know the one with the sharks of self-loathing.

Oh hello back round to depression and apathy and fuck it all.

We need more emphasis on the non-motor symptoms. We need more support. Certainly, I got no information at diagnosis and everything since has been my own research.

How did you begin writing? How do you write so openly about PD and your family?

Like most creative people I have always dabbled in the other arts. No! Not the dark arts mwahahah. But I didn’t really start writing seriously until a few years ago. Believe it or not, I have several romance novels waiting to find a home. But it turns out I am more at home writing non-fiction. I took a memoir writing course during COVID and realised I had quite a lot to tell for someone fairly young.

This course was run by the wonderful Kamin Mohammadi whose work you can check out here. She still runs online memoir writing courses from her home in Tuscany.

Initially, much to the amusement of my writing group there was ‘NO way on this earth I was going to write about Parkinson’s’. That worked out well. I think I didn’t want to write dry, research or depressing stuff. But once I put pen to paper my slightly odd humour came out and I found you people to read it! Being open about my PD is the only way I can deal with it and poking fun helps.

Has PD brought you anything positive?

Phew. Now there’s a question!

It’s brought me you guys 😘 I don’t have a local support group and it’s not really my style but the community here and Twitter have brought me fun, joy and tears in equal measure! So, thank you.

I am more careful with myself.

I am closer to my friends and family.

I use my time better!

I appreciate (and have an excuse) living more slowly and deliberately.

I know that the end of all things…isn’t the end of all things.

Thank you for all your questions, there are a few biggies that I will explore in the next letters.

with love

Emma xx

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From the murky corners of the web:

• Ruzzolone is a wonderful Italian word for tumble or hard fall. Here's a little more about it and how to pronounce it! I thought it handy for the PD community 😅

• This is a great article about menopause and the lack of care for women. Segways nicely with proposals to change UK legislation to protect the rights of women experiencing menopause have been in part rejected by the government due to fears such a move would discriminate against men.

• Frustrated with life but can’t yell at everyone? Here is the perfect solution 💪🏻

• On a lighter note check out this lovely Instagram feed of the most stylish woman with Parkinson’s…she 91!

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