Hello lovelies, and 👋🏻 to the new folks here. I am so touched by your shares, emails and comments. An extra big thank you to my paying subscribers - your support helps me keep writing this letter 😘

One of Parkinson’s biggest lessons? Adaption. It’s also one of the more painful lessons. Dearest, readers, I have broken enough bones and decorated my pale skin in bruises so often to attest to the painfulness of these ‘lessons’.

(Don’t you hate the language around all this?…lessons, journey, fight, warrior etc 🤢 Letter for another day!)

When you first receive a diagnosis there is a huge impulse to push against the new reality it presents. Sometimes that push back is denial, sometimes it’s a complete collapse and other times it’s to push for curative solutions. Mostly it is a mix of all. I was weirdly relieved when I got mine - at least I had a reason for being shite!

But there comes a point when quite a lot of the grieving is done when we have to learn how to adapt. If we can’t do it for ourselves then we usually are compelled for our families or our circumstances force our hand.

Now by ‘adaption’, I don’t necessarily mean acceptance. That is a whole other kettle of steaming pooh. In fact, 4 years in and there’s not a glimmer of the ‘A’ word. But I have got used to the fact I have Parkinson’s. I nod to it across the room as if it is an acquaintance I once spent a drunk evening with and revealed too much about ourselves. Awkward.

One of the first moments of the adaption process is all about being pissed off with the diagnosis and getting used to the sound of it inside your head.

Then I think comes the fitting into your life. Now, most of us Parky folks have the luxury of a slow build before things become un-doable. Even though the terror of the inevitable is a form of torture at least we can begin to build in our adaptions. Gently we can change our routines. Most of this for me is ensuring I leave enough time for everything! Not only am I slow but it all takes so much effort. So as they say in Swahili - Pole-Pole (slowly, slowly) Planning and routine really help, unexpected changes do make my Parkinson’s do the fandango.

As a result, I am a bad friend. Well, not really but in the beginning, I was cancelling and pulling out of events. I have reset boundaries. It is only fair to let people in your life know what you’re capable of and what is a realistic expectation. This does mean you have to be brave! You will find some folks drift away as you aren’t the wild party gal you once were. But there is plenty of people who are more than happy to support you.

Finding a community can be incredible. It took my writing this and joining Twitter to accept a community. At first, I thought it would be everyone moaning about their experience with Parkinson’s but I was wrong! There is huge positivity and a lot of laughter. Parkinson’s doesn’t seem to take away our sense of humour at least!

There isn’t a smoothie or smartwatch or regime that will cure us but they can help us feel better and believe we have a modicum of control over the disease.

It’s good to feel active in our own wellness but don’t forget to ask for help! « Note to self! I still insist on trying to do things that my previously able-bodied state could manage. It’s taking practise to overcome pride and reconcile the shame of being ill. Somedays when I am obviously ‘ill’ then the help is forthcoming because I’m in need. BUT the 'hidden bits* make it harder. It seems silly to ask for physical help when it’s my anxiety which makes every task so challenging. Practise and practise some more and I promise you’ll get more comfortable with asking. Maybe.

In essence, we need a Parkinson’s handbook.

Let me know your take on adapting to chronic illness in the comments and if you like this nonsense consider sharing, giving me a tip and/or a like. 😘

With love

Emma xxx