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    Christmas...and the decline...

    Christmas has left me empty. The season for joy and happiness has been haunted by the thought that this might be the last. Michael has gone down hill in the last six months...He is dependent - although not all day - on the ventilator. It has gotten into his digestive system - so food creates all...
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    His eyes

    I don't know how to explain it - but Michael always had the most beautiful set of blue eyes. Something has happened in the last month to turn them from beautiful to strange looking. Like a glassy eyed blank stare. Don't know if its the meds - or the fact the disease is affecting his brain so...
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    The ugly truth about SSI

    I have been at war with SSI. It is the craziest thing I have ever seen in my life. We have the diagnosis. We have all the testing. We have the orders for the cough assist and ventilator (which Michael has a loaner from the ALS closet), but we can't get disability. Uhhh, lets see Michael - take...
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    Dr.Visit

    Another 7 pounds gone in a week and a half. It's disappointing. No matter what we do - can't keep the weight on. He won't drink ensure. Wants everything to be ok - and the same as it always was....It is so hard to accept I guess. Of course - its hard for me too. The doctor told me that once the...
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    The Wicked Step Sister

    My husband has been diagnosed with ALS - this past month. He has both bulbar and limb onset. The bulbar symptoms are the worst...The panic in his eyes when he is choking is just awful. We are trying to do the best we can in coping with the Wicked Step Sister that has moved in and is trying to...
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