Thursday, May 24, 2012

MS on the Brain

Which is better than on the spine, so said my old neurologist. And so far the brain has been where it seems to be the most comfortable, for now. Which generally indicates more cognitive issues and less serious mobility issues. And that means, the best way to  stump me is to ask for my phone number. A guy totally threw me for a loop and asked me the other day. First I started off with my old number, then I got confused so I lied and said that was my cell#. Then finally, after giving it some thought, I spit out the correct digits. Thankfully every time stores ask for my number, does anyone just give them out like that?, I just say 'no thank you' and avoid the whole issue. Not that I would give it out anyway.

Ok. I found these articles to be rather 'germane'. The use of that word is a little tribute to my brother-in-law, Sean, whom I thank for introducing it. When I was 15 or so. I was contemplating starting another blog so I could keep things of note, like these articles, organized and accessible, but not so much to anyone is not interested. But I haven't. So if you are not interested you can 'skip to the end'* and find something else.

Every once in awhile I get newsletters with links to articles like these. Sometimes they are about the latest death or side effect due to the latest drug. Can death be considered a side effect? It effectively halts all progression of a disease, so I'm not sure. But sometimes there are more interesting things like the following.

This one is about the Myelin Repair Foundation's work. I read about them when they just started and their singular approach to discovering how to promote remylenation, something none of the other drug companies were focusing on. The man who started it, Scott Johnson, has a personal story as he was diagnosed with MS about 20 years ago, I think. Though it has felt like an eternity watching their progress, I know it is a million times faster than other groups and Scott understands that time is of the essence. Some people don't have 10 yrs to wait for the trials to start and then another 10 to get it the results  and  FDA approval.

This one was particularly germane, as it mentions particularly  women diagnosed at a young age. Both of which apply to me. I think I read the article elsewhere with a title that focused on the cost (up to $40k a year) and side effects (permanent scar tissue build up, having to stick yourself multiple times a week, feeling like you have the flu, liver problems etc) and went on to question whether or not is was of any benefit to patients who's MS appears "benign". I don't know how many neurologists would concur there is a category of "benign" MS. My old one said it is a matter of time before it is not so benign, therefore drugs were the best bet. In my experience, I have not found much benefit, and when I found none, happily dispensed with them. I actually just recently cleaned out my cupboards where I had multiple containers of used needles. You have to dispose of them at specific sites and making an effort to get rid of them was not on my radar screen so they piled up for years. I had to make two trips to Bartel's to get rid of them all as they can only hold so many in their once-a-week-picked-up receptacle. Oh, and the fact that I had to pay a disposal fee for each container was also a deterrent. Once a day for 7 years adds up.  It didn't cost me anything to keep them on the garage shelf and I rarely saw them. Until Shane decided we should clean the garage last week. I thought they were all gone, but I found one more box in the kitchen cupboard yesterday. I don't know how long it will remain there. Its not really in any one's way.

Warning- this article contains numbers. Fortunately I was able to extract the information I wanted from it anyway.

                                                            *The End

Shane and I were just discussing cultural literacy the other day and how many references, quotes, etc. exist for just a generation. The above 'skip to the end' is of course from The Princess Bride which I remember watching over and over with my cousins, friends, siblings. We could quote pretty much the whole movie and used the lines in daily conversation wherever they fit. Although one time, I inadvertently used the 'its possible, pig' and the recipient was not amused. It is good to check your audience first. I just assumed everyone had seen it. I feel sad for the kids who haven't seen it. Somehow my kids' education wouldn't have felt  complete without it and I felt it was my parental duty to make sure they did. Shane decided they also needed to see some Monty Python so we've shown them some select scenes from The Holy Grail. Having seen it before myself, only select scenes. Fortunately it is easy to find 'The holy hand grenade', 'the black knight', 'the bridge' and of course the 'killer rabbit'. Audrey was not as amused by the bunny one as she is convinced all rabbits are docile and deserving of the utmost care and reverence. Despite the scars we all have when one of ours

We are finishing up our school work in the next couple weeks. Audrey finished her end of the year testing and feels she did well. She will be doing algebra next year! how the time flies. The other kids will theirs soon. Shane starts vacation tomorrow! A much needed one. Last night he got home at 6:30, which is not unusual, then got a call two minutes after he said 'hi' and was on the phone for another half hour. I am hoping to get some house/yard work accomplished and lots of relaxing and some time for us to get away for a bit.

I might try my hand at maternity clothes shopping again. My sister remarked the last 5 times she has seen me I was wearing the same outfit. Its because I have 5 of them and it's comfortable. But it may be time to add some new things. And then I have my ultrasound coming up, where we may/may not be able to ascertain the gender of our newest arrival. Kateri is hot ot trot on getting anything we may want/need right now. I told her we'll hold off at least until we know to prepare for a boy or girl. I am afraid there will be no holding her back once we do know. Audrey didn't cooperate at her ultrasound and then I skipped the ultrasounds for the next two. So Cyprian was the only one we knew about. It did help with name decisions. We are pretty set on a family name for a girl, but not so much for a boy.

While I've been clicking the keyboard, the big kids have been shooting footage for a movie they are making. Cyril just came to show me some clips and so far it is looking good. Pippin makes a very cute King Arthur, just to give you a hint. I will definitely link to the finished product and a collection of bloopers, which with kids acting, directing, scripting, and filming there will be some good ones. And just now Kateri came in to tell me she got rid of her toy kitchen and fridge and I didn't need to worry about them. She decided she needed more room in her room and that she didn't use them enough to warrant all the space they took up. So I lugged them down to the end of garage, with Cyril's help, and suggested we ask the neighbor girl if she would like them. Apparently she, and her mom, said yes. So Kateri got Shane's dolly out and wheeled the stove over while the mom carried the fridge. We have great neighbors.

Cyril decided he is done with lizards and we hauled the big tanks out of his room to the end of the garage. One got picked up the other day by a fellow home-schooler, and the other is spoken for as well. I feel like hauling lots of things down to the end of the garage and watching them disappear with not much effort on my part. It is a good way to start spring cleaning.

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