Recent content by Nuts

  1. Nuts

    Hospital care and Care act law

    The one time there was a 2 hour gap between family/private caregivers in the ICU my husband almost died. There was a code Blue two rooms down and all attention was on that room. He needed suction and couldn't signal anyone. From then on, if I had to leave to use the bathroom I called for a...
  2. Nuts

    The movement that can make or break your spirit

    In the midst of what you are doing everything is exhausting; I remember all too well. People take poop for granted--until they can't. I was lucky to not deal with the big D, but used everything from Miralax to digital stimulation and manual extraction (yep, had to google those two). I have two...
  3. Nuts

    Accelerated death benefit / life insurance

    We looked into accelerated death benefits, and just as we were about to pull the trigger, learned that on one of the policies if he did not pass within a year we would owe interest on the money at 10% a year. Be sure to ask if there is a penalty if he lives longer than a year.
  4. Nuts

    I'm losing my soulmate, life, love of my life, everything.....

    Tomswife, Matt originally said no feeding tube and no vent. Eventually he did both. Some PALS stick to the decision and others change their minds, probably depending on how they read their quality of life at the time. Having the BIPAP will give him time, if he choses it. One of the hardest...
  5. Nuts

    I'm losing my soulmate, life, love of my life, everything.....

    ST, as I read your heartbreaking thread I don't see what your partner was asking for (ill), but I wonder if it's what I faced with my husband. At one point he was considering driving his chair off our dock and into the lake. I think he may have either tried or done a trial run one day, but...
  6. Nuts

    New CALS - totally broken-hearted

    I am so very very sorry--with the kind of sorrow that only someone who has been through this can understand. My husband was 55 also when he was diagnosed. He's been gone four years, and as I look back I think I made it through his five year journey by focusing on him. Nothing else mattered, but...
  7. Nuts

    Introducing Myself - And Question about Guilt Over Delayed Diagnosis

    Allie, I can look back and see symptoms two to three years before Matt was diagnosed. Among the things that I"m thankful for is that we did not know any sooner than we did. Frankly, that knowledge would not have changed a thing except to rob us of the last "normal" years we had. If this was a...
  8. Nuts

    VA getting started experiences

    I'm coming to this thread late, as I don't visit the forum often these days. You have probably already learned this, but there is (or was) a grant to adapt temporary housing (such as living with a relative) the the Vet does not own. That would help get through the transition to a new adapted...
  9. Nuts

    Giving up hope

    Robin, as a CALS, I wanted my husband with me as long as possible. At some point, I finally realized that I needed to let him drive the train. We had some crazy adventures during his progression, but we had means to do what he was up for, and I was at a point in life where I could devote myself...
  10. Nuts

    Consultation with Duke ALS Clinic

    I can't say enough good about Dr. Bedlack and the Duke ALS Clinic. They are not only incredibly knowledgeable, they are also wonderfully compassionate. One fo the things about Dr. Bedlack that always amazed me was that he responds to patient emails himself, and quickly. I don't know how he...
  11. Nuts

    Meds for CALS

    I asked for an antidepressant when I realized I was in trouble, and also ended up on anxiety meds when I started having chest pains. The cardiologist said my heart was good, but that I needed the meds to get me through without that changing. Yes, talk to your doctor. You will have a lot of...
  12. Nuts

    Can hoyer lift be used for the car? And other questions.

    You have some fabulous questions--clearly you are thinking ahead. Is your dad being seen in an ALS clinic? Multidisciplinary clinics have your dad come in periodically and send a range of specialists in to see him. They are experts in what's coming and are typically good about making...
  13. Nuts

    My husband is mean to me now.

    Of all the horrible things ALS visits on us (collectively), I think FTD is the cruelest. When the dementia set in I had to decide that I was the caregiver and my husband was no longer in his "right mind". That enabled me to not take things personally and be matter-of-fact about certain...
  14. Nuts

    Looking for some answers

    I'm glad that you read the sticky note--please know that it was written by people in this forum who can only reiterate what it says. People with ALS don't feel weak. They just are. They think they are fine and, early on, they feel just fine--they just can't lift what they used to or they fall...
  15. Nuts

    Als?

    Jeremy, you've been told over and over again that what you describe does not reflect ALS as anyone here knows it, and trust me, the people who have been answering you know ALS. By asking these questions you are asking for the same answers over and over. Please, ALS is a one way ticket. It is...
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