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ALS Is Bad Enough, Thank You .

Some days I can really relate to Brittany Morgan, the lady with brain cancer who chose to end her life on her terms, rather than die horribly on cancer's terms.  Death With Dignity, in my humble opinion, does not go far enough.  While I am glad everything worked out well for her (presuming she is not gone to Hell for her actions), people like me with a muscle disease cannot self-administer the prescription, Therefore Death With Dignity is not really attainable.

I am forced to live this life such as it is. Although I missed my window of opportunity, I doubt I would have taken it when I was able. I still had hope. I get so very frustrated with caregivers, my condition, and myself!

The nurse last night was unhelpful and patronizing. When I wanted to be turned onto my right side, he told me that he could not, although he had done just that while changing me moments before.When I tried to speak to him, he didn't even attempt to understand me. He kept saying mm-hmm mm-hmm mm-hmm, obviously not listening and not caring to listen. I got upset and told him so which came out like gibberish. He muttered, "I'm not doing this! " and angrily stormed away. Adding insult to injury, I'm sittin' here with what I jokingly refer to as a "Chaco Taco". No joke. It feels disgusting! I'm incredulous why they thought it was a good idea to have two men "care" for a quadrapalegic woman! Imagine how I felt being stripped naked, laying there, paralyzed, Unable to cover my ALS-altered body. Most caregivers would cover me up with the clean gown then remove the soiled one, but not these insensative oafs.

If that is not bad enough, this male nurse is callous administering medications into the PEG tube using cold water and plunging the concoction quickly into my stomach causing a crampy bellyache. Of course, he was all nicey-nice And was oh so happy to give me some Tylenol to soothe my "muscle spasm". I could not wait to sleep and escape my nightmare and wouldn't you know that I did not get a call button nor did I get my bipap all the stinkin' night!

Ya know, ALS is bad enough without bad patient care.

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Location: University of Washington Medical Center, University of Washington, 1959 Northeast Pacific Street, Seattle, WA 98195, USA

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