1. B

    Peg tube nutrition

    I have been using my peg tube for almost three months. I can't chew, so all my nutrition comes through the tube, I have been living exclusively on Jevity 1,5, along with many supplements and vitamins. My vital signs are very good. Is it desirable or even possible to live only on Jevity ...
  2. KimT

    Question for those who can still eat

    What do you eat? What diets have you tried. Have you simply tried to maintain/gain weight or have you tried high antioxidant diets, anti-inflammatory diets, paleo, etc? Are there things you have incorporated into your diet that you didn't eat before. Have you found you feel better or worse...
  3. C

    Second guessing myself

    So here's the lowdown. Last year my husband bought me airline tickets to see a dear friend of mine who has a home in Ireland and will be there on July 12. He was independently able to transfer at the time he bought the tickets. By April of this year, it was clear that he would need more...
  4. A to the CALS board

    Hi...while I've visited the other boards and even posted, this is my first time posting to the CALS board. This past week my husband got his official diagnosis of progressive bulbar palsy. About us- We live in NH. I'm a stay at home mom, 3 kids - 2 are from my prior marriage (21 & 17) and we...
  5. F

    My journey, more questions. :)

    Hi everyone and Happy Memorial Day. As time goes on, it seems more questions come up. My neurologist retired so I'm in between providers. So, far, what has changed the most is my right hand/arm. It's getting harder to turn the ignition key, can't hold the coffee pot really anything that...
  6. Chumpy

    24/7 nausea

    Tube feeding help.... My husband has an ongoing nausea issue, when doing feeding, if I bolus he tolerates about 500ml pushed in about 10 minutes but only twice a day. He stays nauseated all day. Taking 2 different meds for nausea already. Not enough nutrition. We've tried slower over night with...
  7. T

    Advanced stage

    Today was our clinic. Day and we were told that since his ALS is advanced, that we need to look into hospice sooner than later, and also decide on trach or no trach. Iam still stuck on the word, "advanced stage" does that mean we are in the last stage before he is bed ridden and passes? I'm not...
  8. Bookay87

    1 year in

    Greetings All, I am a 46 year old Black woman who was diagnosed with Progressive Bulbar Palsy in August 2015. (stressed my race because I haven't ran across many African Americans with this disease and I hope to raise awareness among my race) My symptoms started slowly I noticed a slurr in...
  9. M

    Ensure Plus or Boost Plus Prices and bargains

    Ran across a deal on Ensure Plus. $5.88 a 6 pack. Sometimes it's even lower. Discounts on first order and free shipping if you buy spend more than $35. search for Ensure Plus
  10. fizz

    Hi from another lurker-turned-member!

    I've been lurking for a while and enjoying all the input from everyone, and I figured I should probably say hi before I start replying to posts. :) I'm Fizz, I'm 24, and was diagnosed 2 years ago with a neuromuscular disease that everyone is somewhat confident (finally) is SMA. I've got a cool...