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Visitor Messages

Showing Visitor Messages 1 to 10 of 284
  1. Aussiemndcarer
    04-10-2018 10:22 AM - permalink
    Hello. I would just like to send you a huge thank you for all your posts that help others. You are truly amazing Tillie.
  2. Wishful
    01-27-2018 08:55 PM - permalink
    Thank you for your reply in my thread, I appreciate you taking the time to do so.
  3. mpnatx
    12-28-2017 01:59 PM - permalink
    Thanks you so much Tillie! Birthdays never meant much to me. But now, birthdays are a major milestone!
    Love you!
  4. blue sky
    11-16-2017 10:28 AM - permalink
    blue sky
    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?
  5. CJnCherie
    09-27-2017 02:25 PM - permalink
    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.
  6. affected
    08-29-2017 02:28 PM - permalink
    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 :)
  7. littlered
    08-29-2017 10:01 AM - permalink
    I want to think that Racee is watching out for Max's Sandy with all that is going on in Houston.
  8. azgirl
    07-17-2017 02:44 PM - permalink
    Thanks, love you back. Glad I finally got tube but SO missing my pool time. You keep a good eye out for us pals!
  9. terrik
    05-13-2017 05:55 PM - permalink
    Thank you Affected:) I posted a new thread under CALS. Not tech savvy, but your instructions were wonderful. Love and Hugs to you! terrik
  10. wdagron
    03-02-2017 02:10 PM - permalink
    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...

About Me

  • About affected
    What's your relationship with ALS/MND?
    I lost a loved one to ALS/MND.
    If diagnosed, when was the diagnosis?
    lala land
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  • Join Date: 04-26-2013


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