Dysphoric Alice

An update, and we’re close

First the good news. My movement is worlds better than it was a few months ago. The dystonia medication gave me back my trunk, my legs, and my voice. If you see me and I look better, that’s real.

What hasn’t changed is my lungs. That medication was never going to help the breathing, and it hasn’t. My breathing muscles are still weak, and that’s what takes my days. A shower costs me the morning. Playing with my cat costs me hours of catching up.

This fund started out for a MouthPad. Then my pulmonologist found how weak my breathing had become and prescribed a ventilator instead, which is a bigger need and a bigger ask. The specific machine has now been settled too: a Breas Vivo 45 LS. It’s light, quiet, and it monitors my CO2 continuously, which nothing has ever done for me.

I’ve found one: a 2025 machine with low hours, battery and humidifier included.

It’s $3,100. You’ve raised $1,530.

Thank you for staying with me through every version of this.