diaphragm

  1. D

    Home on a ventilator or staying in the hospital - potentially indefinitely

    Hi everyone, So my dad has been in hospital for 2 months now. He went in with a GI bleed, then he got pneumonia so he was endotracheally tubed, then we opted to go for a tracheotomy and ventilator as my father still has much use of his legs and head although he has little use of his arms, upper...
    • DavidS
    • Thread
    • bipap breathing canada caregiving dad diaphragm father hours life muscles pneumonia tracheotomy ventilator worried worry
    • Replies: 31
    • Forum: General discussion about ALS/MND
  2. Andy2020

    Breathing problems with my Dad?

    I am hoping some of you experts can help me figure out what to do for my Dad. Here is his quick story. My Dad started going to the YMCA in 2007. He would work out 6-7 days a week for 1-2 hours. He was in great condition. In January 2009 Dad suddenly had his shoulders and neck curving...
    • Andy2020
    • Thread
    • advice back blog breathing breathing problems chair confused dad decline diagnosed diaphragm drugs family heart hours ice immediately joelc night oxygen physical therapy problems speech speech therapy story therapy tracheotomy ventilator wanted work wrong
    • Replies: 15
    • Forum: General discussion about ALS/MND
  3. D

    Forced Vital Capacity and Vent

    As some of you know, Jen and I had quite a roller coaster holiday season. For those that dont a quick recap: 37 year old wife Dx with Bulbar Onset ALS in 03/09, PEG in August, our twins turn 3 next Sunday. Dec. 4th Ambulance for respiratory distress Dec. 8th Tracheostomy Dec. 10th transfer to...
    • Dave C
    • Thread
    • als back breathing bulbar bulbar onset chair decline diaphragm dynavox erica fvc holiday hours joelc medical onset peg power power chair respiratory test transfer vent ventilator voice
    • Replies: 4
    • Forum: Current caregivers
  4. C

    Diaphragm pacers

    Does anyone have information on diaphragm pacers in the u.k.? I emailed the clinic in Paris, but they didn't reply! I know of a hospital in Sheffield who are trying to raise money for them, but they too haven't answered my emails. Getting one on the N.H.S. is probably not an option, but I think...
  5. F

    Bulbar Onset/ Should I keep questioning DX?

    Hi all, Again I write for my Mom. She was diagnosed with Bulbar onset and the 2nd opinion at Clinic in SF confirmed that diagnosed - sort of. They said she is an unusual case. All her symptoms are in her neck, throat and diaphragm. She can not swallow, has slurred speech, short of breath...
    • fab1
    • Thread
    • 2nd opinion bulbar bulbar onset clinic diagnosed diagnosis diaphragm emg love lyme lyme disease onset slurred speech speech swallow symptoms test treatments weight loss
    • Replies: 10
    • Forum: General discussion about ALS/MND
  6. S

    DeLores Logue Weaver

    DeLores Logue Weaver passed away Monday morning, less than one year after being diagnosed with bulbar ALS. She died peacefully at 5:05 AM with her husband and adopted daughter holding her hand. She was the first US ALS patient to have insurance pay for her Diaphragm Pacing System -...
    • Snette
    • Thread
    • als angel brain bulbar bulbar als clinic diagnosed diaphragm family insurance reading research
    • Replies: 10
    • Forum: In memory of
  7. M

    For the ladies

    Hello to the ladies on this forum-- I have a few odd questions specific to our gender. anyone who has read my posts may recall that I have an 8 month or so history of off and on again muscle twitching, bad fatigue, muscle weakness, some mild atrophy in the hand, wrist, forearm area and off and...
    • Moonmark
    • Thread
    • als atrophy diaphragm emg exercise fatigue muscle muscle twitching muscle weakness pain questions saliva symptom twitching weakness worried worried about als wrist young
    • Replies: 11
    • Forum: Could this be ALS?
  8. pvale

    Cpap? Bipap?

    I had a sleep study at Barnes Jewish hospital Thursday night. The result of that was that I had over 200 15-30 second periods of not breathing when laying flat on my back over 4 hours, and 30 more when laying on my side. The result of that is they are ordering me a CPAP machine to be here...
    • pvale
    • Thread
    • als back bipap breathing bulbar cpap diaphragm foot hours muscles natural night problems progression sleep speech swallowing
    • Replies: 48
    • Forum: General discussion about ALS/MND
  9. N

    How much can the bipap compensate?

    My brother-in-law was diagnosed in January 2007, and his breathing rate - according to his FVC % - has declined at a consistent rate since then. He started using a bipap at night when his breathing approached 50%, and now that he's at 31% he's going to be using it most of the time. My sister...
  10. J

    Diaphragm pain?

    I have been waking up with bad pain in my diaphragm and my doc told me to increase my bipap use when this happens(keep it on after I wake up). I was diagnosed in May with limb onset but is moving quickly to affect my breathing/speaking. Using the bipap doesn't do much to help the pain. If...
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