ALS - To The Moon and Back — Episode 17

Send us Fan MailThis episode starts with one of those brutally honest check-ins that probably sums up life with ALS better than anything polished ever could: “Yeah, so when I said I was good… I lied.” Lisa talks openly about the strange balancing act of feeling hopeful and encouraged by genuine improvements — better coordination, less spasticity, stronger core function and positive signs from physios — while also navigating the absolute exhaustion that comes from simply trying to keep living a normal life. Dog trials, birthdays, friends, noise, conversations, medical appointments… sometimes it all just becomes too much. A huge part of this episode centres around the emotional and physical toll of ongoing infusion treatments and the reality of being repeatedly used as a training “guinea pig” for port access procedures. There’s frustration, tears, dark humour and a really important conversation about advocating for yourself medically — especially when your body is already carrying more than enough. Portia, as always, manages to balance fierce protectiveness with hilariously inappropriate commentary, including the unforgettable line about nurses with cataracts probably not being ideal for precision needlework. But this episode isn’t all heavy. Far from it.There’s talk of skiing dreams with “spaghetti legs,” Paris adventures, Tom Cruise-induced histamine reactions, drag-queen engineering solutions involving hot glue guns, mouldy blinds, woo-woo full moon energy, introverts pretending to be extroverts, and the ongoing reality that humour remains one of the best survival mechanisms available to human beings. There’s also a deeper thread running underneath the laughs — learning when to stop, when to say no, when to rest, and when to give yourself grace instead of constantly pushing through. Support the showThank 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.