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  • Hello Tillie,
    I am sorry for your loss.

    I had a question regarding your experiences at night and the challenges. I found it difficult and I was wondering if a new communication device for night or sleeping time will help?
    Hi. I'm a CALS. Never posted. My Significant other is Bulbar onset and is scheduled for a PEG tube procedure next week. I think I remember you posting that if it had been your call, you would not have had it done. She hydrates through a PICC line right now and wants to lose the PICC line. May I ask why you made that comment? I am concerned...

    Thank you, CJ.
    Sandy has not had water actually in the house, and had filled the pantry. She also never lost power. The water moving through her yard however is amazing. I've sent her photos and video of Racee and joey in Max's tree :)
    Thanks, love you back. Glad I finally got tube but SO missing my pool time. You keep a good eye out for us pals!
    Thank you Affected:) I posted a new thread under CALS. Not tech savvy, but your instructions were wonderful. Love and Hugs to you! terrik
    Hello,
    I have a question pertaining to Bulbar Onset and was hoping you would be gracious enough to read/reply.
    I have been having bodywide fasciculations for about a month or so, and for two weeks have been suffering from 'throat' symptoms. If I am out and about, and am talking a lot...the back of my throat and mouth in general feel tight. I find I trip over words (but can correct it) and that this goes with what feels like post nasal drip in the back of my throat. My fiance hasn't noticed any issues with my voice...but I have. I had read a post of yours pertaining to your experience with Bulbar onset (I am very sorry to hear, my condolences) and that post-nasal drip was the first symptom(?) To be honest, I have been freaked out since seeing that. Be that as it may, the neuro I did see about a week ago saw no fasciculations on the tongue. I was just hoping to touch base with you on the subject of Post Nasal drip or for more clarification or insight? Thank you for your time...
    Tillie,
    I didn't want to ask this question on the public forum but I have been thinking about a PALS that I haven't seen on here for some time...didn't know if he was still alive. His name is Max. Do you know?
    I don't write very much but I do read most of the posts - you are very helpful. - Thank you!
    Debra
    I am seeing Stevie Nicks for the first time this weekend. She will now have a new "meaning" for me. Thank you Tillie.
    Tillie -
    I've updated my DIHALS post with my current results. I feel like I have my anxiety in a fairly good place right now - thanks to Klonopin and some very stern advice from you and a few other members of this forum. I apologize for any offense. Neuro symptoms are scary and Dr. Google is a lunatic. I got caught up in it. I am tender hearted and compassionate and it broke my heart to read your thread about me "trawling" and a need for me to go away and get help for my anxiety. Noted and done. Best to you, and again, sorry if I offended.
    Hi,
    I have seen people say you are very helpful! I am new to this forum and do not know how the start a thread.. I have been trying to figure it out on my own but am having a hard time figuring it out... is there anyway you could tell me how to do that? Thank you so much..
    Hi Tillie...

    We've spoken on some of my posts before - my husband was diagnosed with pbp back in the spring. I had seen a thread you had commented on and wanted to ask you some questions about anger and outbursts if I could?
    Thank you...Amy
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