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Hey Jean: Welcome. I don't post much but posting is sometimes cathartic. I have bulbar onset ALS. DX was October 2022. I read a lot. I just learned about the Deanna Protocol. I am reading about that now. I am going to get the peg tube soon. Choking is becoming more frequent...

Update. I went back to work on 1/17/23 and made it all the way to 1/29/23 before contracting the meta pneumo virus. 2 weeks of struggling to breathe through heavy phlegm. The virus made my compromised voice unintelligible. I am a criminal court trial judge (or at least I was) and I have to...

NG. I’m in your club. Bulbar onset dx 11/7/22. First symptoms (docs thought it was dysfunctional larynx) started 3/14/22 with airway closure. You seem to be more positive then me and I admire you for that. Let’s both hang in there and do our best to sleep progression. I’m sorry you have this...

Kim. I was dx 11/7/22. Had Bulbar symptoms since 3/14/22. Just gave up my job because my speech is not clear enough and my job required that I speak to large groups of people. Would you tell me what an anti- inflammatory diet is?

Slow progression is something to hope for and your husband already has it. I hope it continues. i hope your husband takes the meds. I take Nuedexta, Riluzole, Tudca, Therma, B12 intramuscular injections and next week I start Relivrio. I got symptoms in June/July (slurred speech, and...

I read your post. Anyone who reports slow progression inspires me. Thank you. Keep going! I got dx mid-Sept. '22. I did not want to believe the local doc but he got the dx in 6 weeks and sent me to Columbia Presbyterian. There the dx was confirmed on 11/7/22. That brought me to my knees...

Hey Al. I am going back to work tomorrow. Doc delayed it from 1/3 so I could have 2 weeks of Nuedexta in me. You are 9 years post Bulbar onset and while I know everyone is different, your experience gives me some hope that I didn’t have before. My voice is still understandable. When that goes...

Thanks Al. Your story gives me a new perspective and hope. I really don't have much in my limbs (I probably should say "yet" and "thank God"). I can't touch my right pinky to my right thumb and if I move my feet side to side I get fatigue after about 10 side to side movements. I will keep...

Hello Cutie. Me too. DX 11/7/22 at Columbia Presb. Hard to believe but soon you will believe and make yourself deal. They say Stephen Hawkins survived for 50 years with ALS and he did not have the benefit of the new meds that we will get. So I'll make you a deal. You pick yourself up off...

Thanks to all of you who responded and thanks for your well wishes. Its been almost 6 weeks since the dx at Columbia Presb. I have lost some weight but my weight seems to have leveled off. I have adjusted to the Riluzole and Tudca. I await approval of the next drug. I think it is Radicava...