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Showing Visitor Messages 1 to 7 of 7
  1. phyllise
    08-15-2016 03:09 PM - permalink
    Konagirl i was wondering how the trial was going? My prayers were there for success. If you have any updates I would love to hear from you. Have a blessed day.
  2. Tracy500
    05-31-2016 11:18 PM - permalink
    I'm glad but not glad to meet others that also have small children. I feel alone, we have a almost 4 yr. old, and a just turned 6 yr. old and 10 yr. old. We have been diagnosed since June 2014, and I believe that the end is very near. Speech is almost completely gone, he should not be eating at all, but still wants to try. Trying to use the gait belt for transfers has become very difficult for me to move him. His legs want to cape in and he is like a big 200 lb rag doll. I don't know what to do next.
  3. njk0407
    05-17-2016 08:33 PM - permalink
    Hi Kelly,
    My name is Nikki and I'm soon to be 37. My husband who just turned 36 was diagnosed Thursday. We too have 2 small children, 4 & 1. Our world has been turned upside down and I believe I'm in a nightmare!!! We are devastated!!! I'm sure you know exactly how we feel. I'm so sorry to meet you under these circumstances, but I really feel like we can relate. We "have" "had" the perfect life :(.
  4. gu1928
    05-12-2016 05:38 PM - permalink
    I just read your message regarding your husband .sorry about what you are going..may Almighty give you and family strength and ease your husbands pain..both physical and mental..I had a question 2 years ago my emg came out clean..it started with muscle atrophy pain and then weakness..since emg came oout clean ..we never went back to als path.was managing with physiotherapy and doctors kept looking into rheumatologist disorders..I went to another Neuro and he says I need emg.to rule outals.did your husband have a clean emg first?
  5. Riggz10
    05-05-2016 02:55 PM - permalink
    Hey - I just read your story on Newly Diagnosed and I am so sorry for the heartbreaking news. I wanted to ask you something and if you don't feel like answering that is ok. But can you describe your husband's spasticity in his legs? Do they ache and feel exhausted? Does he feel like he ran 10 miles but in reality he didn't do any sort of exercise? Or is it like they say - no feeling and they just don't work? I've been having trouble for over a year - mainly in hands - but legs also. They just ache - getting up and down is brutal. I haven't fallen yet. But who know? Any reply would be appreciated. Thank you and God Bless.
  6. konagirl
    04-27-2016 08:36 AM - permalink
    Hi there. I was actually born in Atlantic Beach. We see Dr Boylan with Mayo. Wow, too young :(
  7. Bob1985
    04-26-2016 09:56 PM - permalink
    Hello, I noticed you are in Jacksonville, I just moved here myself from South Florida. I live in Atlantic Beach, I have had MND since I was 21 and now 31 years old. I just wanted to say hi. Do you go to clinic at Mayo or Shands? -Kind Regards, Bob

About Me

  • About konagirl
    What's your relationship with ALS/MND?
    I am a caregiver for someone with ALS/MND.
    If diagnosed, when was the diagnosis?
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  • Last Activity: 07-24-2018 12:51 AM
  • Join Date: 10-16-2015


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