Wow. All the blogs are up and chattering today. I can hardly keep up. I don't think there is one blog out there written by an MS'er that hasen't responded to the dreaded news of Tysabri. Not being on meds gives me a little less of an impact. I don't fully know what it's like to have to inject myself and deal with side effects of meds or anything and hope that one day moving to a once a month infusion would be a great improvement. On the other hand.... I came to read much about Tysabri because in the back of my head I always think... the day I DO have to go on meds, I sure hope I don't have to go through injecting myself every couple days... hopefully the Canadian government will have approved Tysabri by then and it will be the drug I end up on.. I could handle the once a month med treatment.... sigh.....Who knows what the future will hold (for us and the drug)? Keep care of yourselves out there in blogger land.... I'm thinking about you all.
I'm so humbled
the MS Society of Canada. In less than a week of posting to my blog, friends,
family and coworkers I have raised $715.00!!! I was NOT expecting this at all.
I'm not sure why. With the Tsunami and Breast Cancer events I thought people
are a little charity'ed out. Clearly not.
A special thanks to Emily for pledging me. Coming from another MS'er means a lot to me.
Now... I need to get a new Pedometer and get back to walking! And get up enough stamina to go 5km!!!
Came across this article today about Sweden... kinda interesting to think that there are clusters of MS'ers too close regionally to be considered for any other reason than environment. Hmmm they talk about the lake region... what's in that lake!?
Further considerations on the distribution of multiple sclerosis in Sweden.
Landtblom AM, Riise T, Kurtzke JF.
Division of Neurology, University Hospital, Linkoping, Sweden.
Landtblom A-M, Riise T, Kurtzke JF. Further considerations on the distribution of multiple sclerosis in Sweden. Acta Neurol Scand 2005: 111: 238-246. (c) Blackwell Munksgaard 2005.Objectives -The geographic distribution of multiple sclerosis (MS) in Sweden over time was compared in order to analyze homogeneity. Methods -The distribution of MS was compared among three nationwide resources: 1301 hospital cases 1925-1934; 5425 deaths 1952-1992; and 11,371 disability pension recipients 1971-1994. Results -Distributions by county (lan) were markedly non-homogenous, with greatest variations in the early prevalence series (16-232% of the national mean), less within the death data (75-170%), and least for the disability series (87-128%). Maximal rates for MS in the early prevalence series were found for the cluster of seven counties surrounding the two major lakes of south central Sweden, as well as for one region on the northern shore of the Bay of Bothnia, and another also off the Bay north of Stockholm. Conclusion -Though the epidemiologic sources are quite different, they are internally consistent and thus provide three consecutive cross-sectional views of the distribution over time. When considered together the data may be compatible with a thesis of the origin and spread of MS within Sweden from the south-central inland lake regions of the country. Such spread within a half century is too rapid for a genetic cause, including HLA patterns.
playing hookie! Or... err...Â pre-planned hookie!!
So, I had a great weekend. On Saturday my step mom and I went out for brunch at Milestones. Yum. Then went shopping at Chapters. I had a gift certificate and bought a book I had heard about and wanted :)Â Then we headed over to Spa Utopia! Its a real shwanky spa and I booked this Hydrotherapy mud bath and a 45 minute massage. It was lovely! I was a little worried going in that they would put the bath too hot. It was at 39 degrees but I asked if they could add cold water and brough it down to 36 and it was perfect! I didn't overheat at all :) Its a good day when you can soak in a tub with over a hundred jets AND not overheat in the process. Ahhh... I was super relaxed all weekend from it!
And even better.... I have raised 765.00 dollars for the MS walk now! Amazing.
Only 160 to go!
for the MS society! And Tod is catching
up... he has more readers on his blog so I think he's got the advantage!
hahah! Kidding, kidding...
Happy Saturday. Its a beautiful sunshiney spring day out there! I might even have to mow the lawn this weekend.
Time for a trip?
Interesting new mouse technology that IBM came out with. Compensates for tremours in your hands.
**Sure pays off having a techy husband who keeps on top of this stuf! ;)
Something a little odd
So, the other day Tod and I were getting ready to go out for dinner. We went out the front door and walked about 15 feet to my car. At the moment I got to my side of the car I was overwhelmed with nausea. We immediately turned back around and headed inside. I sat down for a bit and didn't actually get sick, but went white as a ghost. Then magically I was fine. I don't have any repercussions from it, but it makes me wonder what the heck happened inside my body to bring that on? It wasen't like vertigo where you feel like your going to fall over... more like instant food poisoning or something. Anyone else have this happen? Is my myelin trying to send me a message?
posted over at Diagnos and Adios.
Biogen Idec's multiple sclerosis drug Avonex can cause severe liver damage, U.S. regulatory officials and the company warned on Wednesday, the latest in a series of blows to MS patients.
I also found this Forbes posting that seemed to down play this news a little to be a minor label change... Mostly I'm disturbed that the actual news in these postings seems to be what the stock is doing and not actually what the real scoop is about the drug.
Oooooh... ahhhh.. look at my new little icon to the right---------->
:) Yes, finally the proper RSS feed in case you don't already have it.
Review: "Fall Down, Laughing"
I just finished reading this book. You'll know him... Squiggy from Laverne and Shirley. It was an okay read... I usually pick up something from evey book I read... One particular thing hit home. He talks about trying to keep working (regardless of what his MS is doing to him) and for him that is working on a set. He always wanted to make sure that he knew his surroundings really well so he would go and practice in those locations to get more comfortable and easily aware of where things were so his brain didn't have to "on the fly" interpret so much information or props ect.
I totally feel this from time to time. If I'm in the mall or driving somewhere I don't know and there's all this new stuff to interpret, I start to feel overwhelmed. When my double vision first kicked in this was *really* bad when going grocery shopping. The IGA down the street has these great big fans just overhead and my eye would catch that movement. So while trying to find something on a shelf, I would also be distracted by the fans movement... so frustrating. I'm not sure I'm doing this description justice, but it makes this sketchy moment where its almost like my brain doesn't know what to follow. Kinda like a short circuit. I figured out that if I put my hand over my eyes like I was wearing a baseball cap that would help big time.
Trees and bees
So, I applied to carry google ads on my site and surprisingly was accepted. You
can see them over there to the right... But I'm really not so impressed with the
ads that are showing. They are certainly not products that I would ever take for
my MS, and I highly doubt that any of my readers (or at least those of you that
I have emailed with) would ever take any of them either. Some of them are okay
and are links to legitimate sites that are helping people (ie: Health talk, MS
pathways ect..). I'm a fan of that as many of those sites helped me a lot in the
early days of my diagnosis. So do I kill the ads? Any opinions? Fatigue anyone?
So, I think by tomorrow I will have caught up on lost sleep. I think. All week I was getting too little sleep everynight by maybe an hour. Then, I had a rotten sleep on Wednesday where I got maybe 4 hours max. So, with the long weekend happening, I have been pretty low key. I slept about 9 and a half hours last night, and hopefully the same tonight, and then I should be as good as new right?
Or maybe its just the time of year? In surfing this week on my fellow MS blogs I'm seeing others dealing with fatigue... Erik posted a bit about fatigue... Dave too... So, is it the season? Does anyone else who's had MS for more than a year find that their bodies change with the seasons?