Recent content by Sara Lee

  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 alsworldwide.org. 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

    Rilutek

    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.
  11. S

    Cardiac arrest after pneumonia

    My husband has a great doctor. He checked during the first 72 hours several times for all of the above things you are asking about and accordingly he said that he believes he will not wake up. The neurologist on the hospital staff agreed. At that point I did sign a DNR and I instructed them not...
  12. S

    Dad fell

    My husband also had his share of falls. It was especially scary since we have little kids. But they got used to it and they would all try to help get him up. We would also laugh a lot which helped alleviate some of the fear. My husband unfortunately progressed so rapidly that we now miss the...
  13. S

    I was married..

    Although my husband is still alive, he has been in a coma for the last four weeks, after going into cardiac arrest secondary to pneumonia. We are married 19 years. We have a large family and the youngest is 3 years old. For all practical purposes it feels like he is gone. The loneliness can be...
  14. S

    Feeding Issues

    My husband gets jevity 1.5 through a pump at a very slow rate, otherwise he gets a stomach ache. For meds and water, I use a 2 oz. syringe. Half of the 5 and a half cans, I set up to go through the night so it doesn't tie him up all day.
  15. S

    Cardiac arrest after pneumonia

    My husband was diagnosed with ALS in November of 2009. He's been in and out of the hospital several times since August. Last time he was admitted was early January with a serious case of pneumonia. Several days after being on four antibiotics, he went into cardiac arrest. He has not regained...
Top