When you’re deep in the trenches of ALS, your perspective is thrown all out of whack. You’re doing everything you can to keep your PAL happy and comfortable, you’re worrying if you’re doing more harm than good, and half the time you’re making it up as you go along (because, let’s face it, ALS throws […]
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Picking The Right Voice Preservation Technology For You (Or Your PAL)
There’s no “easy” part of ALS or any neurodegenerative disease, but one of the most mentally and emotionally frustrating points is when the patient begins to lose their ability to speak. Everyday we take verbal communication for granted, and losing your voice can feel incredibly dehumanizing. With recent increases in neurodegenerative disease awareness — especially […]
After The Ice Bucket Challenge: What Is ALS’ Next A-HA Moment?
Cold. It was really really cold. Like, so-cold-it-burns cold. Like, I-can’t-feel-my-skull cold. Like, it-was-a-super-long-week-and-I-drank-my-frozen-daiquiri-too-fast cold. Weirdly, though, that cold felt good. And it wasn’t just because it was August and I was sweating so much you could fill a swimming pool with it. It felt good because about three seconds after that icy water numbed […]
Tips For The First-Time Caregiver
So. You’re an ALS caregiver now. Maybe you’ve done this before — but chances are you haven’t. Most ALS caregivers have a close relationship with their patient before the diagnosis (they might be your spouse, partner, parent, close friend). You may be thinking, “I love my [spouse/friend/parent/etc], but I don’t know what I’m doing!!” Trust […]
#ALSHillDay18 Recap With An Advocate
This past Mother’s Day weekend, Americans from many states and backgrounds assembled on Capitol Hill in Washington, D.C. to learn, confer, inform, and advocate about ALS. The 2018 National ALS Advocacy Conference is a two-day event that features panels and presentations by researchers, organizers, and ALS patients, followed by meetings with congressional members. While […]
