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Visitor Messages

Showing Visitor Messages 1 to 5 of 5
  1. pinky
    11-12-2018 10:21 PM - permalink
    Hello Starente, I have not been on the forum in a long time. My husband just marked five years on
    a ventilator, trached at age almost 73 with good limb function. He now has lost all of his motion except for facial expressions, just turned 78. He has been remarkably good humored and patient throughout this experience. Although now, it is very difficult, and he required much help from caregivers. I am unable to do what is needed at this point. Pinky
  2. tripete
    09-22-2016 09:39 AM - permalink
    Hi Star, I am still plugging away. How are you?
  3. Riggz10
    06-07-2016 11:27 AM - permalink
    Hey starente - can you please read my recent thread and let me know your thoughts. You seem to have very good knowledge.
  4. starente15
    01-22-2015 07:19 AM - permalink
    Hi Nancy! Sorry we have to 'meet' this way but I'm really glad you found me. As I was reading, I felt like I could have written your message. It's so similar. My dad has also lost 50 lbs and I found the comment about the 'sick' diaphragm interesting. I never would have made that connection. Just some general questions: by any chance, is your husband a vet? how long since diagnosis?, have you been to the first clinic yet? Please stay in touch! Christine
  5. NeedCourage
    01-18-2015 07:49 PM - permalink
    Hello starente!
    I saw your new post on diaphragm onset; looks like we are in the same club.
    My husband, age 77, is the same. Some weakness in legs but still can drive, walk around the house, get in and our of bed ... but uses the trilogy vent at night and a couple of times during the day. Can't walk a half a block - not because legs give out but because of lack of breath. He lost almost 50 pounds almost immediately because (as I am told) his metabolism was so revved up trying to breath that it was on overdrive. Ironically, the position of the 'sick' diaphragm made him feel full and eating was a massive problem. Anyway... please contact me if you wish to talk - I know there are very few of us here with this particular set of circumstances... You will run into a few others. Glad I saw your message! Nancy

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  • About starente15
    What's your relationship with ALS/MND?
    I lost a loved one to ALS/MND.
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  • Last Activity: 12-24-2018 04:46 PM
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