Hi, thank you for your messages and comments, keep βem coming. Donβt forget to have a chuckle at the A-Z of Parkinsonβs out every week for wellβ¦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. π
Weβve established that this is an absolute ball-ache of a disease, right? So if itβs 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 isnβt 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. Itβs a thing I love doing as well. BUT he needs that time with his mates and away from me and Parkinsonβs.
Itβs absolutely ok for them to leave the room and take a deep breathβ¦or scream.
We canβt expect our friends who donβt experience the new βusβ every day to always get it right. Even my closest friends still say daft things likeβ¦ βyou donβt look that badβ or βyou move really wellβ. I have to refrain from yelling βYes! for five fucking minutes I can and then for the next 3 days Iβll be flat on my back!β
Itβs quite good to clear our minds of expectations. I try to remember that Rβs job is incredibly stressful, heβs 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 Parkinsonβs.
This tweet inspired quite a few of us to be more conscious about how we present the disease to others. Iβm interested in some folk not sharing much and others more so.
I alternate between trying to hide my symptoms and oversharing! The problem is itβs exhausting being βstrongβ and that leads to parky-hyper-mode.


In yesterdayβs A-Z I added B for Braveβ¦this applies to our carers, family and friends as well!
When you
haveare a carer for a person with Parkinsonβs (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 canβt 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 thereβ¦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.