Sarah's Story #1

#OurParkinsonStories

I met Sarah on Twitter and we hit off straight away. Her good-humoured and kind tweets and replies make my day. (She also keeps this letter on its toes with insightful comments and suggestions!) We have chatted via Zoom comparing Parky notes and she has kindly shared her brilliant poem.

Feel free to connect with her via Twitter.

Stalbo @Sarah_says_hi

Lovely Indian Summer going on in the Netherlands!

Sarah’s Story

It started about seven years ago,

The doctor said, "it's a hooray toe"!

Because my big toe gave a thumbs-up sign

And rubbed on my shoe all the freaking time.


After that my left arm wouldn't hang straight

I started to wonder why l never felt great.

It reminded me of how my mom had been,

She'd had Parkinson's too, so l knew what I'd seen.


I started to get an uneasy feeling

The idea of PD just sent me reeling!

When the dx came, it didn't go down well,

I had 15 months of utter hell.


15 months when l felt insane

Dealing with grief and fear and pain,

I've had lots of trauma during my round

But this just hammered me into the ground.


And now....well it's better than it used to be

I'm feeling more like the "good old me".

But there's a dark, scary shadow now living with me,

And probably forever always will be.


I don't wait for a cure, I'm not that brave

I don't expect that l will be saved.

It makes me sad that this happened to me

I can't be the person l really want to be. 


But I'll try to be brave and as happy as l can 

For my lovely family, my dearest man

And for myself too! Because I'm no dunce

And l know that we all, only live once.

Have a story, piece of art, video, song, or a rant you’d like to share about your experience with Parkinson’s? Read more or Submit here: emma@whostolemydopamine.com