switch

  1. A

    Hospice

    I had posted earlier about denial among family members about my PALS ( 79 year old woman diagnosed in 2013 with ALS). I took her to the clinic yesterday. Her FVC is 36. She has decent strength in her hands and forearms; voice is strong; swallowing is worse. The neurologist recommended...
  2. A

    Family Members in Denial

    All -- My mother is in her late 70's, has no ability to move her legs and has limited use of her arms, which means she has limited strength in her hands and forearms and that's it. Her breathing is okay but below 50 percent. She is only beginning to have trouble swallowing. She lives with...
  3. BlsdMama

    Sigh.

    Are they thinking ALS? I presented with foot drop. Not a big deal. She noticed hyper reflexes right side and clonus in the right foot. Did MRIs - assumed MS. Saw some white spots but said no MS. Did an EMG. EMG was clean. I asked for a second opinion at a teaching hospital. She sent me...
  4. rose

    New non- balloon peg tube button!

    Hi everyone, I've not been on much lately, and I wanted to share that I got a new low profile peg tube that does not have a balloon. The manufacturer does not state specifically anywhere in their literature (that I can find) how long it is supposed to last, just that it is potentially...
  5. S

    Worried I Have ALS

    Hello everyone. Currently diagnosed with Anxeity & BFS, but unfortunately I'm showing more & more signs of ALS, & im terrified of this impending doom... OK so My name is Shawn I'm a 30 year old male & this story starts just before my 29th birthday. My suffering started about march of 2015. But...
  6. C

    progression question

    Hi, I just switch unfortunately the forums from DIHALS to thi one:( Doc`s told me 99 % MND and with hypperfeflexia the chances for something else are pretty slim... So a question I have marked atrophy in my both hands and very very heavy in the tongue, also some in shoulder. What to expect...
  7. N

    Question about medicaid and home health vs hospice

    So we only have one company in the area that does home health and hospice. Right now I am getting pt twice a week along with an aid that helps Vicky shower and shave me. Twice now they have had a rep come by and " advise" us. He is really pushing us to switch to hospice and go on medicaid even...
  8. J

    Super Scared and Afraid

    Hi All, First off I want to send my thoughts and prayers to all of you on this forum that are suffering from ALS and to all of you that are CALS and have lost a loved one! I was hoping you all could offer some insight and some guidance on what I should do, since you live it on a daily basis...
  9. G

    Need Some Reassurance about my symptoms

    Hello everyone, I would like to first thank everyone for posting and offering their opinions/advice in regards to ALS. It takes a lot of courage and strength to discuss such a terrible disease. Also, the fact that a majority of people posting here are currently living with such a terrible and...
  10. M

    Feeling so scared and alone

    Hi everyone, I'm new here. It's taken me a while to join as I just haven't been able to face it but some thoughts and opinions would be greatly appreciated My symptoms are as follows May 2014- suddenly noticed I couldn't catch my breath, would need to sleep sitting up. Sleeping very disturbed...
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