in the most recent issue of “ms in focus,” from the ms international federation, the main focus was on the disease courses in ms. even though everyone is different, there are some constants in the various stages of ms, and how it progresses. this issue goes through each stage – relapsing remitting, primary progressive, secondary progressive, and malignant (i had no idea about this one – also called marburg’s ms, can result in death within a few months. scary stuff. thankfully it is very rare). it is of some small use to find information that can help you identify which stage you are currently in, with the caveat that there is no distinct dividing line between stages. this information would be useful – perhaps more so – to help people without ms, caregivers, partners, etc., understand the symptoms that appear in the different stages and the transitions between stages. in reading the magazine, it was a little startling to find myself so clearly reflected in the description of primary progressive ms. there was not much there that i didn’t already know, but for anyone who wants to know more about what the different stages of the disease, and how it progresses, this issue would be a really good read. nice, too, not to have ads from drug companies touting their own agendas.
another just discovered resource is the ms info wiki (where did this term “wiki” come from?), containing a wealth of information. it is very up to date, and like other wikis it is editable – you can upload information and make changes to information currently on the site. it can be hard to filter through all the clearing-house type sites out there. each of us has to look at them and find what offers the most relevant sources for our own needs.
my son benzo is away at school and has very graciously offered me the use of his room as a sort of office – very nice when i can’t sleep and need a place to go hang out, write, watch something on hulu, or lie on the bed and read – without having to negotiate going down stairs and hauling myslef back up again. i have discovered that sometimes having someone read to me – to have a voice talking to me – can help me fall asleep. so i can bring my laptop into the bed, and listen to a podcast, with the volue down so that i can just barely hear it. very comforting. so, thanks, benzo. i promise not to disturb too much of your stuff.
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