Sharing the Burden of Parkinson’s

 
Posted on April 11, 2018
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There’s Safety in Numbers when it comes to Long-Term Health Conditions

They say no man is an island. But when I was diagnosed with Parkinson’s disease three years ago at the age of 29 I definitely felt like I needed to drift from the mainland for a bit. To spend some time working out how I felt about it. To get myself balanced.

But time and space is a luxury when you’re a daughter, sister, friend, colleague, employee with work to get done, bills that need paying and washing up sitting in the sink. The world doesn’t stop for bad news. So I had a day to process the fact everything had changed, make a decision about how I was going to deal with it and work out how the dynamic between me and my new unwanted partner could work for life.

I was lucky that the words to talk about my Parkinson’s came really easily and just a year after diagnosis I was speaking at conferences, acting as a spokeswoman for the condition and writing articles about my life with it. By all accounts I was coping well and inspiring others to face it head on.

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But for all my confidence in my new found role as an ambassador I’d never actually properly spoken to someone else with Parkinson’s. I’d dodge invites to support groups thinking they’d be filled with older people. I’d avoid Facebook groups like the plague. Even friendly drinks with people ‘just like me’ filled me with dread. Don’t get me wrong, I wasn’t in denial, my Parkinson’s reminded me every day that it was there, but meeting people further down the line in the disease progression felt like a look into a future that I wasn’t ready to see.

So I continued as an island until one day I went to see my nurse complaining of palpitations. She suggested it might lessen my anxiety to speak to someone and pressed into my hand 2 pieces of paper; 1 with a referral to a counselor printed on it, and the other a handwritten web url.

Curious, I typed the url into my phone, saw it was the Facebook page for a group of local working age people with Parkinson’s and against my better judgement I clicked ‘join’. Scrolling through the posts I was struck by the positivity and pro-activeness, these people were just like me, out there fighting the good fight, not huddled together clinging to the wreckage like I’d assumed.

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I typed out my story on a post, inviting people to introduce themselves (in for a penny in for a pound), and within minutes had an influx of notifications, each with a reply more welcoming than the last.

A few of the people who replied became Facebook friends and sometimes we’d comment on each other’s posts about Parkinson’s, united in our shared hatred of muscle stiffness or hard to cut steaks.

Often, awake in the middle of the night, I’d notice one of them was online too and we’d talk about the fears that kept us from sleeping. When I had scares, forgot to take medication or had questions that nagged at my brain, they were always there at the end of a message to share their wisdom.

When a friend of a friend, Martin, was diagnosed she put him in touch and I felt honoured to take those first few tentative steps with him, sharing stories to make sure he knew however overwhelming it all felt he wasn’t the first and he wouldn’t be the last to go through it.

In return, when he found his feet, he introduced me to David and his Young Parkinson’s Network. David was diagnosed at 29 too, and similarly, felt like the forums and groups available were rarely relevant and often intimidating.

He was an island himself for 2 years, turning to YouTube videos of Michael J Fox to use as a gauge for whether what he was feeling was ‘normal.’ He set up the Network out of frustration at the lack of working age Parkinson’s peer to peer support and has seen its member numbers grow, proving his hunch that the need to chat about the condition is a common one.

The Network hold regular Google hangouts and I took a deep breath, brushed my hair and joined one recently. The positivity, support and acceptance warming a heart that once thought it could go through this alone.

Sharing all the little niggles, pains and intricacies that Parkinson’s brings with it every day make them more bearable. Because no matter how supportive your family and friends are there are things that only someone going through the same situation can understand fully. Things that get built up in your head become more trivial when you realise everyone else is dealing with them too.

It’s for this reason that I decided to write about my experiences in my book ‘Dropping The P Bomb’. I wanted to create something that would be like David’s Michael J Fox videos, or my frantic Facebook messages in the night. Something that would be a marker for the newly diagnosed to know what they’re feeling isn’t unusual, and that they’re not alone. Something that might start a conversation or help them find their voice.

Looking back at the start I wasn’t ready to speak to others until I’d worked out how I felt about it myself. By waiting until I was ready I had more to offer them back rather than just taking their support and giving nothing in return. I’m so glad I let my Parkinson’s family in.

My advice? Take time alone to process big news but don’t stay as an island. Make a friend who has a boat.

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(Note from The Editor: Many thanks again to Emma for being so honest about her own journey with Parkinson’s. You can read more about Emma here. If you or someone you know is struggling alone, take a look at these websites for more information and support. 

Young Parkinson’s Network – google hangouts, interesting blog posts and a welcoming vibe are all regulars on this site aimed at people with Parkinson’s who are of working age.
Parkinson’s UK local groups – there are over 350 local groups run by volunteers across the country. They organise social events and meetings and are always on the lookout for people to join in with awareness activities.
Facebook local and national groups – search ‘Parkinson’s’ in Facebook and you’ll find a number of groups usually set up by people with the condition. Find one local to you and join.
If you can’t find a group local to you chances are you’re not alone in looking. Why not start your own and speak to your healthcare team about promoting it to other patients.)

 

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