Hi, thank you for your messages and comments, keep āem coming. Donāt forget to have a chuckle at the A-Z of Parkinsonās out every week for wellā¦you can work out how long! Also, a little shout out for the lovely gratitude tips you give me! It all helps keep me sane (i.e wine) but mainly helps me run this letter. š
Weāve established that this is an absolute ball-ache of a disease, right? So if itās bloody awful for us what about the people around us? Those that have to watch as we struggle and decline. They listen to our worries, pains and frustrations. They smooth our path in a hundred different ways. They worry for us and about us.
We need to remember that they might not be ready to accept all parts of the disease yet. I can state that losing the ability to do XYZ isnāt an issue for me. When someone around might find that the worst imaginable scenario.
Our carers need their own support network. And we need to be supportive of that! Of course, I miss R when he goes off on his trips camping in the wilds. Itās a thing I love doing as well. BUT he needs that time with his mates and away from me and Parkinsonās.
Itās absolutely ok for them to leave the room and take a deep breathā¦or scream.
We canāt expect our friends who donāt experience the new āusā every day to always get it right. Even my closest friends still say daft things like⦠āyou donāt look that badā or āyou move really wellā. I have to refrain from yelling āYes! for five fucking minutes I can and then for the next 3 days Iāll be flat on my back!ā
Itās quite good to clear our minds of expectations. I try to remember that Rās job is incredibly stressful, heās a social worker. When he walks through the door I have to curb my desire to list all the shitness of being alone with Mr P entails. I try not to get pissed off when he needs to vent about his day.
Our carers, families, friends, colleagues in fact anyone around us deserves time off from Parkinsonās.
This tweet inspired quite a few of us to be more conscious about how we present the disease to others. Iām interested in some folk not sharing much and others more so.
I alternate between trying to hide my symptoms and oversharing! The problem is itās exhausting being āstrongā and that leads to parky-hyper-mode.


In yesterdayās A-Z I added B for Braveā¦this applies to our carers, family and friends as well!
When you
haveare a carer for a person with Parkinsonās (or any disease) you redefine bravery.This is the sort of thing that makes you stronger than you ever thought you could be. This is where you start out feeling like you canāt manage another step, moment or thought. Yet, again and again, you prove yourself to be stronger than you were ever meant to be.
You sift out grains of courage from the deepest parts of your being. You share your strength supporting others, sharing and giving them hope to hang on in thereā¦even when you can only see a foggy path ahead.
You find another reason to keep going, to keep battling on through the endlessness of it all. But for others, for hope, for love you keep going.
You are brave.
As ever pop your thoughts in the comments or hit reply!
With love
Emma xx
P.S There is some good advice on being a carer here.
& love your writing THANKS š„°š
I'm so lucky; my husband is a rock! I try not to overburden him, but l know l probably do sometimes. I try to have some days without mentioning the P word, but it's bloody hard because the disease is almost permanently in the foreground! And l've got another disorder on top of parkinson's: functional neurological disorder. I feel like a walking disease manual𤯠oh well....let's keep having a laugh...and definitely red wine š· cheers!