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Hi everyone, I hope you're all doing well. got a PEG 1 month ago. I don't like it but know it was a wise decision.

Firefighter, I'm also curious. Can you share with us how you're now able to eat regular meals? Thank you.

Thank you Laurie, I'm keeping my fingers crossed.

Hi everyone, I had my 3 month clinic visit today. I asked my neurologist what he felt the chances of Edaravone being approved this June were. He stated it has been approved and he had already contacted our pharmacy to start the process of getting it on our formulary. I questioned him on...

The black cat analogy is perfect!

My CRP was apparently just enough to qualify me for the trial. The coordinator said that was actually good news as those with low levels tend to progress slower. Hmmmm....not so sure about that. We'll see.

Thank you for sharing. It was very encouraging. :)

I'm currently in the Np001 trial. I will have my 5th of 6th infusion the 1st of March. Unfortunately, I have not noticed any benefits. I took a fall Christmas Eve and fractured my ankle then fell on my church steps about a month ago. Ironically, neither of these falls were ALS related, (go...

Re: PALS roll call Wednesdays ( or whenever) I'm still here, trying to adjust to the never ending changes.:?

Thank you all for your words of wisdom, experiences and suggestions on this topic. It has been my biggest fear also due to bulbar onset. I drove myself to ER in April because I thought I had choked on a cookie. Of course, I was seen and released as that is not what happened, beside the fact that...