Tubie Halloween

Well crap. I’m so sorry to hear this news. I don’t have any great words of wisdom. Just know I - like so many others - are following you and your journey and we wish you all good things for you in whatever form those good things may come.

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Oh my god, when you said that number, I yelled out in shock. I had to stop the video and rewind it to listen again. That is such a drop. I am so sorry. I wish there was something I could do to make this better. It’s easy to say, yes. it’s an adjustment but I know you’re you’ll be strong and you’ll do it but emotionally. It’s a hard and devastating thing. ❤️

On my front porch right now, fighting the gnats crawling on my neck. On BiPAP all day. Last VLC was mid 30s, but now I’m surely in the twenties too. But my unuseed but offten cleaned peg tube is already six months old. You will be ok.

You are so inspiring Brooke. I visited the graves of my aunt and grandfather two weeks ago who lost their lives to ALS. Keep fighting and appreciate you.

I got my feeding tube 4 weeks ago. I HATE IT!!! But I have bulbar-onset so am likely to lose my swallowing ability in the months ahead.

You are so brave Brooke.

No words.. my heart hurts.. yet you keep going .. sounds cliche.. but you are so brave ! My admiration for you is boundless!!

Praying for you every evening. My thoughts are with you and family as you grapple with this unrelenting effing disease. I cannot fathom how we don’t have major trials ongoing and our best clinicians working on preventing progression. Your brave posts instill much needed urgency🫶🏻

Sooo glad you are getting the tube 🙏💙 don’t forget it’s not all or nothing, you can still eat in the day and just get a supplement at night. Yay …but im sorry about yr low number that sucks ☹️

Well, this sucks @limpbroozkit. But JFC, Brooke you do what you must and you’re amazing. #ALSsucks.