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♥ lgelb lgelb is offline

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Visitor Messages

Showing Visitor Messages 1 to 10 of 120
  1. spacecowboy000
    06-27-2018 03:12 PM - permalink
    spacecowboy000
    Yeah....no one has heard any of the perceived slurring or sounding nasal (out of my ordinary) except one person....one time...weeks ago, lol. Even then they said it sounded like a slight lisp, not slurring. I figured maybe that it's caused my the muscle tension from my bruxism. The tripping up, pauses, mixing together words happen when I talk fast/trying to keep up with a convo.. Those are normal for anxious people though I assume.

    Then I will start looking for a SLP and start practicing in front of a mirror. :)
  2. spacecowboy000
    06-26-2018 07:36 PM - permalink
    spacecowboy000
    I wanted to thank you again, Laurie. You and the others have really helped me. I have been to a rheumo and he is running tests. So far everything is looking good!! My therapist has been helping with my anxieties but he is on vacay atm :P

    I was curious if you knew though if there is anything I could do to help with my speech? I know that the emg was negative and if I had bulbar it would have shown up considering I had/have been twitching everywhere. Speech therapist maybe? Cause the tripping on words, pausing, leaving stuff out, and mixing words together is making me a bit less social.
  3. NinaP
    06-23-2018 10:48 AM - permalink
    NinaP
    Hey Laurie. Thank u for ur message. I called my neurologist to ask for an appointment and she told me its most likeky from stress and me being upset and very tired. But if i want to can go for a check. Ill wait it out a bit and if it doesnt pass ill go. My tongue moves like crazy in my mouth. I feel it. But truth is im stretching it all tbe time to see if its the same sixe or if it can move normally.
  4. NinaP
    06-22-2018 03:07 AM - permalink
    NinaP
    Hey Laurie. Whats your advice? What should i do? Wait it out? Believing its physological? Or try and search it? Im going to ENT tonight but i think she is not going to find anything. Im so scared. Slurring comes and goes. I have too much saliva and burping almist all day. My neck has mild pain and is tensed and sore. Also it seems like my neck pains when im about to cry. I dont know anymore.
  5. Emily B.
    06-18-2018 01:52 PM - permalink
    Emily B.
    Laurie - can you tell me how to change my screen name? Thanks.
  6. hncgv
    06-16-2018 09:50 AM - permalink
    hncgv
    Hello,

    I live in the Seattle area. My brother recently passed away (lung cancer) and we have some cases of Nutren 1.5, some cases of Real Foods Blends and some gravity feed bags that I would love to pass on to someone in this area. Would you know of anyone or is this something I can post on this forum about? Thanks, Holly
  7. Vangie
    06-12-2018 05:23 PM - permalink
    Vangie
    Laurie, I am so scared. I know I have posted some pictures but I don’t think you saw them. Would you be willing to take a look? Is that atrophy? I have been reluctant to ask as I know it is redundant but within the last two weeks I have had a great amount of weight loss. I don’t know if this what weight loss looks like or atrophy. I am noticing it pretty equally all over both arms, hands and knuckles, wrist, legs, and feet/ ankles. It was just like kaboom! Then I started noticing week feeling in hands arms and feet, almost jelly ish. I am not able to see my neuro until July and I am scared to absolute death. I value your opinion so if you please have a moment to just tell me what your thoughts are? Please��
  8. shawnbaldwin
    05-18-2018 04:27 PM - permalink
    shawnbaldwin
    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.
  9. Wishful
    01-27-2018 08:53 PM - permalink
    Wishful
    Hi, I just wanted to thank you for your replies. I appreciate the feedback.
  10. Koko
    01-13-2018 06:47 PM - permalink
    Koko
    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 ?

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?
    09/2009
    City
    Seattle
    State or Province
    WA
    Country
    US
    Biography
    My husband, who died November 2014, was born with Marfan syndrome, later had diabetes and ALS
    Occupation
    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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