Search results

  1. S

    New Caregiver, advice would be appriciated.

    I know this sounds cruel, but do not allow your dad to be totally dependent on you. In the long run everybody will suffer, you, your children and your dad. Trust me on this, been there, done that. With the best of intentions it is just not feasible to kill ourselves to make everyone happy. I...
  2. S

    ALS in 20's

    Steve & Barbara Byer of ALS Worldwide, founded the organization in memory of their son Ben who I believe also had ALS in his 20's.They are truly amazing people who have all the knowledge that is available on ALS and are easily accessible. Visit My husband was diagnosed at 35...
  3. S

    outdoor wheelchair lift to give away

    I'm sorry I didn't respond sooner but I was out of town for a few days. The lift is still available. Feel free to contact me if you want to stop by to see it.
  4. S

    outdoor wheelchair lift to give away

    I have an outdoor wheelchair lift which we never ended up using. I'd be happy to give it to anyone who wants to pick it up, located in Brooklyn, New York.
  5. S

    Things I Love

    I love that my husband has a great doctor who does house calls. I love that I have a respiratory specialist friend who will come over whenever I call him. I love that my kids seem to be living a fairly regular life despite ALS in their lives. I love the many great friends I made in the last 2...
  6. S

    Lost Weight

    You can also get Nestle Carnation Instant Breakfast VHC, which stands for Very High Calorie. An 8 oz can has 560 calories. You can have 2-3 cans a day by mouth or peg. I used to blend it for my husband with some ice cubes and frozen strawberries and/or peaches or any other fruit can be added.
  7. S


    My husband had terrible headaches while on rilutek and he was progressing so fast that we figured we have nothing to lose by stopping it. Another PALS in our area also had bad side effects & very rapid progression & stopped it as well.
  8. S

    The House is Too Quiet

    Even though my husband is technically not dead, he is only unconscious since January 9 when he went into cardiac arrest due to pneumonia, I know about the loneliness. There is simply no other adult to talk to and it's worst at night when I can't call anyone either. There are so often bits of...
  9. S

    Home renovations

    Our bathroom is a total of 6X8 feet. We have a handheld shower and no door, only a curtain which is seldom used.
  10. S

    Cardiac arrest after pneumonia

    No, this is not an induced coma and its already lasting 6 weeks.