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I am a wannabe optimist. I want to believe that people have some kind of internal ethos that guides their decisions. Republicans have always touted themselves as the fiscally responsible party. Their arguments against governmental programs to help the poor, the disabled, the elderly has always begun with their opinion that we can't afford these ( Read more... ) -
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About 9:20 AM this morning, my mother came to the end of her life. It was not unexpected and I think she went as peacefully as possible. I signed the paperwork to have my mother given hospice care on Wednesday. Friday, my sister Cheryl called saying that the doctor didn’t think Mom had much longer.
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Final loading dose... DONE!
I’ve had trouble writing the last two posts. I’m a slow correspondent, what can I say? I’m not sure this post gets to what I wanted to talk about, but it’s close. I may work on it some more, but I thought letting people know what’s going on was more important than perfect communication ( Read more... ) -
We do’ed it!
Second try on the third dose, done ( Read more... ) -
My third dose of Spinraza
I have been trying to write about my second attempt at the third dose of Spinraza and haven't been satisfied with the results yet. I realize there may be some of you that are worried (or maybe I elevate the concern people might have). So, I should let you know that the third dose was successfully done. I have one more to do and the loading doses ( Read more... ) -
Once more into the breach, dear friends.
Looks like tomorrow I go back to Stanford to try again for the lumbar puncture. After last week's attempt there was talk about using the CT to do my lumbar puncture, but that takes a lot of radiation. Using the CT on a regular basis doesn't sound like a good solution. Connie recommended that we try again with a doctor who successfully did my ( Read more... ) -
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At this point it's difficult to tell whether I'm getting better or worse. I think on the whole things are improving, but never long enough to be sure. Tapering off of prednisone, I called the on-call doctor yesterday to talk some things through. I'll start using my nebulizer more frequently. Somehow I had the impression it was a bad idea to use the ( Read more... ) -
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With a lot of three steps forward, two steps back, I seem to be improving. Doctor put me on prednisone for my wheezing and it seems to help. Talked to the doctor about my use of Xanax for panic attacks and she seemed to think I was using them well and as intended. I went without Xanax at all yesterday, but found myself using one about an hour ago. ( Read more... )
