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♥ lgelb lgelb is offline

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Visitor Messages

Showing Visitor Messages 1 to 10 of 113
  1. shawnbaldwin
    05-18-2018 04:27 PM - permalink
    Hi Laurie
    We msgd briefly at 2yo when my mom was diagnosed with ALS and unfortunately as of Weds her condition has dramatically decreased.

    My M she is 88yo, bulbar palsy onset, trilogy 24/7, stopped walking w/assistance last month and is on hspce.

    My M was in relatively good shape up until Weds morning when she woke up with difficulty breathing, her oxygen was in the low 80's and she was not lucid. She is still in this state now other than her oxygen level increased somewhat. The CP Hosp ALS nurse thinks she might have a mucus plug. The cough assist, mucinex, saline solution via nebulizer have all proven infective - she used to get large white globs of mucus out via the cough assist but lately nothing. The Oxygen via the trilogy helped with her Oxy levels although I'm sure she has CO2 buildup.

    If this is in fact a mucus plug do you have any other advise how to remove it and would it help her to update her trilogy settings while she is struggling.
  2. Wishful
    01-27-2018 08:53 PM - permalink
    Hi, I just wanted to thank you for your replies. I appreciate the feedback.
  3. Koko
    01-13-2018 06:47 PM - permalink
    Hi !
    I dont know if i am allowed to contact You here , i have not posted in The forum . I am from a very little country and want to be anonym . The situation is that i and another member here " gunni " from Norway , Would like to have contact via email and i want to aks if there is anything You or an administrator Can do to give my email adress to Gunni ?
  4. wishmobbing
    12-18-2017 06:01 PM - permalink
    Hi Miss Moderator!
    Sorry, I have not yet wrapped my head around the inner workings of the forum.
    Only after I posted the "duplicate" of my bird post did I see, that my first post was on hold to be assessed by a moderator. I guess that's whenever there's a link to another homepage? Or is it when you embed pictures?
    I was so proud of myself earlier getting the avatar sorted out... ;- )
    Anyway, I hope that the first post is still in the approval loop, as I don't see it just now. Otherwise it really is "for the birds".

  5. MindyL
    12-02-2017 06:00 PM - permalink
    Can you help me please? I feel forward and awkward asking for your help. I posted in do I have ALS forum. Sorry if this is not where to ask for help.
  6. blue sky
    11-16-2017 10:07 AM - permalink
    blue sky
    Hello Laurie,

    I am sorry for your loss.
    I had a question regarding the experiences during the night. I found it very difficult. I was wondering if you think having a new communication device at night will help the situation?
  7. Staceyg
    11-12-2017 02:05 PM - permalink
    Hi. I'm sorry to ask for help. Can you look at my post and give me your advice. I have only looked a a few posts and your advice is amazing and thorough. Thank you
  8. running1203
    10-22-2017 03:54 PM - permalink
    Hey Laurie,

    I was wondering if you could help me with something? I am a 25 year old male with body wide fasciculations (literally randomly everywhere), no weakness, no atrophy. My neuro found hyperrefelxia in my left knee. Could that mean ALS? Especially without weakness? He wants to do an MRI to rule out MS. He said he didn't think ALS, but I find the twitches and asymmetric hyperreflexia very worrisome.
    Thank you very much for your time.
  9. Becazican
    10-18-2017 08:57 PM - permalink
    sorry to bother you but i was wondering if you heard how vince(blue and gold) was doing , i see he hasn’t posted since aug and i use to follow him on bfs forum it last few posts broke my heart. If you can drop me a note if you know how he’s is or if he has passed on.
  10. TomSanti
    09-26-2017 01:12 PM - permalink
    Hi Laurie,

    I'm fairly new to these boards there seems to be that there are an awful lot of youngsters posting today, is this typical?
    Really enjoy reading your posts,

    Be well and God bless,


About Me

  • About lgelb
    What's your relationship with ALS/MND?
    I lost a loved one to ALS/MND.
    If diagnosed, when was the diagnosis?
    State or Province
    My husband, who died November 2014, was born with Marfan syndrome, later had diabetes and ALS
    Exp. in hospitals, clinics, devices, pharma, managed care. MPH, Board-Certified Patient Advocate.


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  • Join Date: 11-05-2009


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