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Visitor Messages

Showing Visitor Messages 1 to 10 of 281
  1. blue sky
    11-16-2017 11:28 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?
  2. CJnCherie
    09-27-2017 03:25 PM - permalink
    CJnCherie
    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.
  3. affected
    08-29-2017 03:28 PM - permalink
    affected
    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 :)
  4. littlered
    08-29-2017 11:01 AM - permalink
    littlered
    I want to think that Racee is watching out for Max's Sandy with all that is going on in Houston.
  5. azgirl
    07-17-2017 03:44 PM - permalink
    azgirl
    Thanks, love you back. Glad I finally got tube but SO missing my pool time. You keep a good eye out for us pals!
  6. terrik
    05-13-2017 06:55 PM - permalink
    terrik
    Thank you Affected:) I posted a new thread under CALS. Not tech savvy, but your instructions were wonderful. Love and Hugs to you! terrik
  7. wdagron
    03-02-2017 03:10 PM - permalink
    wdagron
    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...
  8. Colawoman
    02-28-2017 09:37 AM - permalink
    Colawoman
    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
  9. littlered
    12-14-2016 10:39 AM - permalink
    littlered
    Looking forward to it!
  10. littlered
    12-13-2016 06:09 PM - permalink
    littlered
    I am seeing Stevie Nicks for the first time this weekend. She will now have a new "meaning" for me. Thank you Tillie.

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?
    05/2013
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    home
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    OZ
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    Tillie

    ...wwW*Www...
    Queen of Hearts

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