In this episode of ALS to the Moon and Back, Portia and I finally get to the thing we were always going to get to… timelines.

You know the ones.
The point scores.
The predictions.
The question people ask — sometimes quietly, sometimes not — “How long have you got?”

I talk about the timelines I’ve been given since being diagnosed with ALS, why I don’t see them as a fixed truth, and how I actually live alongside that information without letting it run the show. We talk about what those numbers don’t capture — individuality, access to care, emerging treatments, mindset, hope, stubbornness… all the human stuff.

We also wander (as we do) into voice banking, legacy, leaving an audio record for the people you love, finding your voice, speaking up, even if it makes you shakey.

This episode is for anyone living with ALS or MND, anyone walking alongside someone they love, and anyone who’s ever been handed a story about their future that didn’t quite sit right.

The timeline is information.
It’s not the whole story.

Thank you for listening to ALS - To the Moon and Back.
If this episode resonated, please share it with someone who might need it.
You can follow, subscribe, and stay connected as we continue exploring life, friendship, ALS, treatments, hope, and all the messy, meaningful bits in between.
Take care of yourselves — and each other — and we’ll see you next episode.

Access Denied

In this episode of ALS to the Moon and Back, Portia and I get stuck into something pretty raw and, honestly, a bit outrageous — what actually happened when I was prescribed Edaravone and then couldn’t get it, even though it was on the PBS and everyone was telling me how “great” it was going to be.

We talk about the quiet side of ALS/MND that doesn’t get spoken about much: the people who haven’t even told their families yet, the pressure to stay small and “not make a fuss”, and why I eventually decided I was not going to just quietly disappear while my treatment fell over around me.

I walk through how I went from hopeful and optimistic with a new prescription… to being told I didn’t “fit the financial model”, to Mark spending weeks on the phone trying to find anyone who could actually deliver a federally funded drug to someone who lives two hours from Sydney. Spoiler: it took writing to the NSW Health Minister and ABC Illawarra before anything really shifted.

We also rewind a bit:

• the early twitching and weakness,
• being treated like a hysterical woman while I knew something was really wrong,
• and then being told I had 24–36 months… just three weeks after my friend Mick died of the same disease.

From there, we touch on what I’m doing to support myself now — things like the Wahls Protocol, supplements, integrative care, and working through long-held trauma in the body. None of it is presented as a cure or advice; it’s simply my way of trying to live well with this diagnosis and give my brain and body the best shot I can.

We finish on something important: fasciculations (all that twitching) don’t neatly map to progression, timelines aren’t guarantees, and there is still room for quiet, stubborn optimism — even with a diagnosis like ALS.

If you’re in Australia and having trouble accessing Edaravone or getting care close to home, ABC Illawarra want to hear from you. Their details are below.

Jen Courtney - ABC Illawarra

E: Courtney.Jennifer@abc.net.au

Ph: 02-4224-5011 or 0407-593967

Thank you for listening to ALS - To the Moon and Back.
If this episode resonated, please share it with someone who might need it.
You can follow, subscribe, and stay connected as we continue exploring life, friendship, ALS, treatments, hope, and all the messy, meaningful bits in between.
Take care of yourselves — and each other — and we’ll see you next episode.

To the Moon and Back is a new podcast hosted by Lisa Wright and iconic Sydney drag queen Portia Turbo — two longtime friends exploring life, love, art, perfume, dogs, grief, humour, and the unexpected twists that shape us.

In Episode One, Lisa shares her recent diagnosis of ALS and the two talk openly (and often hilariously - we thinks so anyway) about how life changes when everything changes — and how friendship becomes the anchor that gets you through.

Raw, real, thoughtful, warm, and sometimes wonderfully chaotic — this podcast feels like sitting with two friends who say the things everyone else tiptoes around.

Perfect for listeners who love honesty, heart, and an unfiltered look at what it means to be human.

Thank you for listening to ALS - To the Moon and Back.
If this episode resonated, please share it with someone who might need it.
You can follow, subscribe, and stay connected as we continue exploring life, friendship, ALS, treatments, hope, and all the messy, meaningful bits in between.
Take care of yourselves — and each other — and we’ll see you next episode.