bulbar onset

  1. S

    New bulbar onset

    I was just diagnosed with bulbar onset ALS at Johns Hopkins. So far I have mostly slurred speech but I can feel my swallowing starting to change. I'm 63, retired and with good health insurance. I had a job where I traveled the world, and have lived a great and adventurous life. I am not...
    • Sunvista
    • Thread
    • als bulbar bulbar onset crying diagnosed health insurance life onset slurred speech speech swallowing
    • Replies: 70
    • Forum: Newly diagnosed
  2. F

    Tracheostomy-pro and con

    My wife has always been against her having a tracheostomy. She is 53 years old, Bulbar onset ALS diagnosed three years AFO. The Pulmonologist asked her about her wishes and she said she was no longer sure. She has lost all voice and has minimal right thumb movement along with some head/neck...
  3. F

    Alert device

    My wife has had Bulbar onset ALS for three years. Last vestige of motor function is her right thumb, head and eyes. She alerts me with wireless doorbell when needed at night and day when she needs help. With inevitable loss of thumb, what advice do you have for me to set up alert device...
  4. P

    Caregiver guilt round 2

    I am about to begin my second round as a caregiver. My mom is the 3rd of her siblings to experience this ALS monster. I was the caregiver for her sister who passed in 2010. She only lived 10 month after diagnosis. So needless to say I am terrified of walking through this again. But the real...
    • pastor
    • Thread
    • als bulbar bulbar onset caregiver diagnosis guilt life morphine onset problem respiratory ventilator
    • Replies: 25
    • Forum: Current caregivers
  5. P

    New to group

    Good afternoon I am new to this forum. I had 2 Aunt pass away due to ALS. One bulbar one limb. They passed 3years apart. NOW my mom is currently going through the testing waiting for diagnosis. On Sept 24th she will see the neuro for the results. We are going through the motions but we...
    • pastor
    • Thread
    • als angry bulbar bulbar onset caregiver diagnosis heart life onset swallowing testing venting voice
    • Replies: 18
    • Forum: Familial ALS (FALS)
  6. S

    Inquiring About Bulbar ALS - Concerned....

    Good Evening, I've been experiencing a wide range of symptoms over the last month or so that may or may not be related to ALS Bulbar onset. I'm a 24 year old Female here in NY. 1: Twitches in the face and legs. These sort of came on out of nowhere, or at least it's that I never noticed them...
    • Sara_livie
    • Thread
    • als als research anxiety back boyfriend bulbar bulbar als bulbar onset cold concerned fasciculations female hope lump mucus nose onset research slurred speech speech swallowing swallowing issues symptoms tongue twitches weakness work worried wrong
    • Replies: 6
    • Forum: Could this be ALS?
  7. 4tloml

    Any diagnosed have this much uncertainty at first?

    I am wondering if anyone has experienced symptoms developing along these lines, because my husband seems an enigma to the 3 neurologists who are passing him around. A year and a half ago, my husband's speech became notably slurred. I had noticed a tremor in his hand and occasional slurring a...
    • 4tloml
    • Thread
    • als arm atrophy back bipap breathing bulbar bulbar onset diagnosed eating emg emotional lability fasciculations food hiccups movement mri muscle myasthenia gravis neudexta night onset speech swallowing symptoms tongue tremor
    • Replies: 4
    • Forum: Could this be ALS?
  8. L

    Those who know about Bulbar? 23 Year Old Male Super Concerned

    Good evening folks, I've done a good amount of searching through this site and don't want to waste too much of anybody's time as I know most people on here are dealing with this very serious illness etc. I just wanted to know if any of you knew any rates or general stats on people getting ALS...
    • LA_boy
    • Thread
    • age als als? anxiety bucket challenge bulbar bulbar onset choking concerned eating food ice ice bucket challenge life night onset research saliva scared sleep speech stats swallowing symptoms trouble swallowing wanted worried
    • Replies: 11
    • Forum: Could this be ALS?
  9. H

    Non Invasive Ventilation vs Tracheostomy

    Hi Friends, It has been so very long since I have posted anything, and my brother is now close to 4 years since his diagnosis of bulbar onset ALS. He went from slurring his words, to feeding tube, unable to speak, unable to walk, wheelchair, bipap and for the past 4 months requires the use...
    • Handmaiden
    • Thread
    • als bipap brother bulbar bulbar onset diagnosis feeding feeding tube hawking hospice lead life onset respiratory support surgery tracheostomy trilogy ventilator wheelchair
    • Replies: 23
    • Forum: General discussion about ALS/MND
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