stats

  1. B

    Statistics

    With what we have all seen in the past several months with PALS who have left us, it makes me question the 3 to 5 year life expectancy. Sure seems closer to two years to me. The outside world doesn't see what goes on in this forum. If it were published, I believe there would a much larger...
  2. 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...
  3. N

    ALS like symptoms- Need advice

    DISCLAIMER- by no means am I saying I have als. I dont want to insult anyone with als by exaggerating my symptoms and thinking they are als. I pray for each and every one of you every day. I am 21 years old. In February i was diagnosed with cancer (lymphoma) and I finished 4 months of chemo...
  4. M

    Blom tracheostomy with Trilogy 100 ventilator

    I wanted to blog about my dad and his recent surgery to get a trach and begin full time invasive ventilation. Prior to surgery he was on BiPAP 22+ hours a day with good use of his arms and hands, able to walk short distances with a cane or walker. Breathing was his biggest problem and he went...
  5. T

    Bouncing back after an injury?

    My dad fell on Friday and developed a subdural hematoma and was in the hospital for 5 days. He lost so much strength that I fear it won't come back. He is having PT and Home Health coming in but he's gone from needing some assistance to a 158lb floppy baby. It's heartbreaking and he's already...
  6. M

    Checking in after 9 months

    I have no diagnosis but slowly increasing weakness.. Last Emg in June clean...strength test last week with ALS dr fine, reflexes fine. I continue to twitch (9 mo) Headache everyday since Jan 2012 travels down left side of spine. MRI fine. All bloodwork fine including CPK. I asked my neurologist...
  7. D

    Looking to learn

    My dearest friend was diagnosed with ALS on Jan 11. She has bulbar presentation. Speech is slurred, swallowing troubles at times, voice has changed. First sleep study and nocturnal oximetry are done, showing obstructive sleep apnea. Some fasiculations. Occasional lyrangospasm are really scary...
  8. W

    BFS to ALS?

    I appreciate the time you spend answering questions on this forum. Since November I have been experiencing wide spread twitching that started seemingly innocently in my eye and progressed everywhere. After reading many of the posts, I took the advice of many and went to a Nuero last week. He...
  9. mysisterskeeper

    cell oxygenation - is vent still sustainable

    The hospice nurse said that if my sister decided to vent at this point she would probably still die because of cell oxygenation and how little oxygen she is moving through her body. She said her o2 stats may look good on a pulsoc but that is only measuring the blood content not how much oxygen...
  10. mysisterskeeper

    vent and stil dying

    The hospice nurse said that if my sister decided to vent at this point she would probably still die because of cell oxygenation and how little oxygen she is moving through her body. She said her o2 stats may look good on a pulsoc but that is only measuring the blood content not how much oxygen...
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