life list

i have a list on my firefox toolbar of life-list links, places to go and things to do, before, well, ok, i’ll say it, before i either can’t do them due to disability or because i’m dead. i don’t actually think i’ll ever get to machu picchu, or even ride the green tortoise, but they are both on the list. the list isn’t supposed to be a list of things i can easily get to, like get a really nice suit, something i can just go shopping for. these are pie-in-the-sky goals, things that, were time and money not longer an object, i’d do. and if i ever manage to retire and not be living under a bridge, maybe i can get to some of them.

i don’t really have any desire, or use for, a really nice suit, but i would love to see angkor wat before the chinese bulldoze it. the newport jazz festival is probably more doable, considering my disability, but i don’t think even macchi picchu is completely out of reach, given enough resourses. given enough resources, anything is within reach.

this art show i did last weekend was sponsored by teva, who make copaxone, and featured a lecture by a local neurologist who said, among other things, that his theory of the course of ms is that at the begining, there is more inflammation and less degeneration. after 20 or 30 years, those ratios gradually reverse and there is more degeneration and less inflammation, which is why, according to this model, the current medications, and even the new ones coming down the chute, are not effective for secondary progressive disease, where there is less inflammation – these drugs and other treatments are really only effective against inflamation. not really encouraging, but it was interesting to hear it laid out like that. and reinforces my desire to be done with tysabri. i don’t think it’s doing me any good, and i just don’t see the point in doing it any more.

anyway, what’s on your life list?

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7 thoughts on “life list

  1. That is an interesting theory. And it would explain why being on a “disease modifying” drug early in your disease helps to delay the degenerative stage: the inflammation causes the issues, so if you remove the inflammation, the neurological issues don’t become so bad? I dunno. Guess I’m just thinking out loud.

    (I’m not a neurologist, I just play one on the internet! 😉 Heh.)

    What else is on your list? I want to go to Vienna…

  2. Thanks for posting about you life list… I don’t have one! I’m going away to a small island next week and I’m going to bring paper and pen and create my list on the beach. I’m excited now 🙂 First on the list will most certainly be scuba diving in the Carribean!

  3. I’m so sorry to hear that you are not going forward with Tysabri anymore. The DMDs are designed to slow the disease process down, and if you were not having any relapses while on Tysabri, it was working for you.

    Pursuant to the Tysabri label which states in part: Tysabri is designed “to delay the accumulation of physical disability and reduce the frequency of clinical exacerbations”, Tysabri is 67% effective in most cases with relapsing forms of MS, whereas the other older generation DMDs (the ABCRs) are only effective by 29% to 34% respectively.

    I have had MS for 32 years, and I am now SPMS with relapses, and I had 21 infusions of Tysabri so far, with my 22nd infusion due in a couple weeks. Since restarting Tysabri in October 2006, I have not had a relapse and only slight disease progression since that time.

    If Tysabri had been around back when I was diagnosed in 1976, I would’ve jumped at the chance to get on this therapy as it is the only one available that is kept my MS stable all this time.

    As far as being SPMS, there are two categories of SPMS (I post this only for edification purposes so that your readers can understand Secondary Progressive MS better):

    1: The inflammation stage (SPMS with relapses), wherein the MS patient still qualifies to receive Tysabri;
    2: The demyelinating stage (SPMS without relapses), wherein the MS patient no longer qualifies for Tysabri.

    I wish you nothing but the very best that life holds for you, and good luck with your future endeavors!

    Lauren 🙂

  4. this is good information about the drugs. i think you are making a well thought out and reasonable conclusion. this is your life and your body…you get to decide what to do. love the idea of a life list. i will have to work on mine.

  5. I like the idea of your “bucket List”.. I may have to think on that one myself.
    Ankor Wat would definitely be on mine too.
    As far as your treatment plan goes, I respect that you are weighing your options, ferreting out the the advertisements vs. the research and decide for yourself. A rule of thumb I use is to question my motives for the decision I’ve made…fear should not be a factor.

  6. “ferreting out the the advertisements vs. the research”

    well said Bubbie. In some cases it gets harder and harder to make distinctions between the two. I’m working on a couple of posts related to this same topic.

    Your choice is your’s to make Stephen. I respect that.

  7. Pingback: ms degeneration

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