caution larry

Hi, I’m Kim! This site provides a little insight to my journey of being diagnosised with Remitting Relapsing Multiple Sclerosis on October 26th 2004. I review books and documentaries, post MS-related news, and share my photos.

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Friday, September 16, 2005
September 2005 Archive
Month End
2005-09-01 05:09:00

Ugh. I really don't like month end much. My job is run directly around the cycle of month end. So yesterday and today consisted of 10 hour days at a fast pace. I'm glad it's over! And even better news is the weather here. Yay for cooler nights! I love it! A normal blanket, that cool feeling outside the blanket, but nice and comfy warm under the blanket... ahhh I love the start of fall!

So, we still don't have a home for Gouda. I'm sad for her. She really just wants to get into a normal house and not be confined to one room. Its just not fair. I'm sad all around about the while scenario. I really just wanted to save the underdog, or under-cat as the case may be.

We're a little behind on doing this weeks podcast. It just seems like 'something' keeps coming up and we don't get around to it!

Oh, and one final note. I see that Friday has had a friend post an update on her situation in New Orleans. Let's all keep good thoughts, happy vibes and prayers that Friday and her family make it back to their house and that her MS doesn't rear it's ugly head in this time of stress and sadness. I can't imagine what they must be going through, but it's devastating to hear all the news coverage from a distance.

Tom's first ride to raise money for MS is done! One more ride to go!
2005-09-03 20:42:00

Originally uploaded by TR in Winnipeg.

Tom just completed the first of two rides raising money for the MS society of Canada! Congratulations! For that ride Tom met his goal of raising over 1000 dollars and rode 175km's!
The second ride is on September 10 and 11th. He has so far raised 350.00 for this ride. Please help sponsor Tom in his ride and to reach his 1000.00 dollar goal! Click on this link, click pledge a rider on the right and put in Tom Jokinen's name!
More news on Tysabri
2005-09-05 23:34:00

I wasen’t going to post any more about Tysabri… It’s a little nauseating seeing the war between the reports of is it safe vs. is it coming back to the market place debates, but this particular new article has some interesting stuff that I had to post. Biogen says it’s all okay, and others say no way.

According to the WSJ article, by staff reporter Sylvia Pagan Westphal:

The analyst's report describes seven non-PML deaths in patients taking Tysabri that "appear to be related to immunosuppression." One death was owing to pneumocystis pneumonia, an infection that only patients with severely debilitated immune systems get; another was because of herpes encephalitis, a rare infection of the central nervous system. Four other deaths were possibly caused by sepsis, an uncontrolled infection that spreads through the body.  The report mentioned that the FDA database contained "numerous" accounts of serious, nonfatal infections that "suggest again that the toll from Tysabri extends beyond PML."

Despite the problems that may be posed by these possible new side effects, Mr. Harr predicted that Tysabri has a good chance of returning to the market. In fact, Biogen and Elan said earlier in August 2005 that they hope to get the drug back on the market.  The companies announced, then, that they had screened more than 2,000 MS sufferers who took Tysabri in clinical trials for signs of PML. According to the companies, the screening produced "no new confirmed cases" of PML.

Show 8: Tysabri, Wobbly Art, and Vikings
2005-09-06 11:15:12

Download/Listen to Show 8
Some Randomness
2005-09-07 05:01:00

First and most importantly, Gouda got a home! Yay! She went home with them tonight and as sad as I am about her leaving us, it's for the better and she'll be happy with a new little 7 year old girl to play with. Happy about it, and yet sad about having to lose her. She was a really cool cat.
I finished reading the latest Harry Potter last night too. Love, love, loved it :) Next in line is a book recommended by Dr. Murray (we'll be chatting with him on the MS podcast soon) called The Brow of Dawn, One Women's Journey with MS. It looks like a good one.
And lastly, we posted a new podcast as of yesterday night. Have a listen if you have time!

Good results on a way to treat depression for MS patients
2005-09-09 01:36:00

Depression improved during telephone therapy in multiple sclerosis patients
Have a read of this article. We all know depression seems to be quite common in MS'ers so here's a way to treat it with good results.

"This sample of MS patients had impairments that affected their ability to engage in social roles, as evidenced by the assessed functional impairment and the fact that 74 percent of the sample was not in the workforce. The use of telephone-administered therapies may also overcome various other barriers in the general population arising from transportation problems, lack of services in the area, child care problems, lack of time, and stigma," the authors write."

Show 9: MS Tests, Jailed for Pot, and a Funny Tune
2005-09-11 10:57:19

In this episode, Kim learns how to hit a post (with her voice, not her car), and talks about the tests most people have to take to confirm whether they have M.S. or not. We also hear a freakin' hilarious song about drugs, talk about how the New Orleans disaster is affecting M.S.ers, and much more. It's a 45-minute show.

Download/Listen to Show 9 

Productive weekend
2005-09-12 22:55:00

Well, I'm pretty happy about all the things we accomplished this weekend. We had a garage sale on Saturday that netted us 50 bucks! Yay! And if you can believe it, this little old lady scammed us! She paid us in fake quarters! I was shocked!
Then, we finished painting our back deck. Its been a long time coming and just by fluke the weather cooperated and we got it done. I still want to put one more coat on just to be sure it lasts and protects the wood, but at least the major coats have been done. Yay.
And then today I spent the day building a new free standing kitchen island/chopping block thingy! Its beautiful! I love how it turned out and I think we'll be able to add a piece on top that would make it possible to have stools on the one side, kinda coffee bar style. Everyone loves a kitchen party right? :)
And now, its time to get ready for my work week.

Oestrogen from contraceptives could delay MS
2005-09-12 23:20:00

Could this article really be true? Seems to be in my case... I stopped taking the pill about 6 months before my major attack happened last year.... Hmmm.... Makes one think eh?

Show 10: Medical Systems, The Pill, and The Brow of Dawn
2005-09-17 10:56:15

Will the contraceptive pill really cut your M.S. symptoms in half? And what is the Canadian medical system like anyway. Also, is 92 years in jail a bit too much for an M.S. patient who was found with medical marjinuana (hint: yes).

Download/Listen to Show 10

Three MS patients in Campath trial get blood disorder
2005-09-17 18:07:00

I haven't really heard much about about this trial... but here's some info from the article:

"Genzyme Corp. said yesterday that it has halted an experimental treatment for multiple sclerosis after three patients contracted a rare bleeding disorder and one of them died.

Campath appeared to alleviate MS symptoms and showed signs that it might be able to halt long-term damage from the disease. But in some patients, it also triggered a dangerous drop in blood platelets, the cells that help the body clot and seal wounds.

Three of 219 MS patients given the drug were diagnosed with the blood condition, called idiopathic thrombocytopenic purpura. Genzyme said it will not give Campath to patients until the safety issue can be resolved."

Fall is here!
2005-09-19 04:34:00

I *really* love fall. The leaves are starting to turn orange (not nearly as vibrant as the east coast, but still) and are starting to cover our back lawn. I don't mind raking leaves. Its usually about 8 bags worth by the time the trees have dropped all the leaves. I just like being in the colder weather and doing the gardening stuff in fall. We despretely need to mow the lawn now. I put some feed and weed down a few weeks ago and then we had a few rainfalls and the grass went crazy! I also love mowing the lawn... but I've yet to complete the job without ovreheating. Its just sucks. So, now my husband usually does it and I do the weedeating. Not the same! So, that'll be my day tomorrow. Oh, and doing the very last coat of paint on the deck. Finally. Its been way too long a process getting it all done! Cross your fingers that it doesn't rain tonight or tomorrow!

To clinical trial or not to clinical trial
2005-09-20 04:45:00

That is the question of the day. I received a package from the MS clinic asking me to participate in a clinical trial for an oral medication being made by Merck. L-000124467 in fact. So, I've read all the documents and its only a 4.5 month trial, but its a big commitment. 7 visits in 4.5 months, MRI's galore and blood and urine samles taken every visit almost. Its a double blind (placebo included) study. Now, how to decide if I should do it?

Additional info: I am not on any MS medications so thats why I would qualify in the study. I am not actively "trying" to get pregnant, just plan to in the next year I would imagine. So, putting off that decision based on being in the trial would be a factor of course. And finally, I keep feeling drawn to doing this. Its a big commitment and I do worry about consequences... and yet, what if this is a great alternative to injectables and I could have been a part of bringing that to market by offering my situation to this study? The study is for an oral med taken once a day. I have also been told that one of the potential benefits are being able to be on an approved drug prior to other people and reaping the time benefits to this. Not sure, but I've also heard I wouldn't have to pay out any money for the drug and would be able to stay on it through the rest of the trial period if its approved. And secondly, I would also have a good basis of what the disease is doing my body over the period of the trial with all the MRI's and blood work ect. And lastly, I may get the placebo! So, no harm done! Sigh.... decisions, decisions...

I *really* HATE comment spam
2005-09-23 06:03:00

Quit it! Grrr. I hate comment spam. I removed over a hundred already today! My apologies to those who had to see the content of them. Ugh. What the heck is going on!? Tod says I should turn off the ability for people to comment anonomously. I disagree. I think some of you like that aspect and would want to keep it that way. But this spam has got to stop! I can't spend this long cleaning up my blog like this! Grr.

2005-09-23 06:08:00

Five new mole holes (or mounds of dirt really) in my front yard today. How on earth do you get rid of these little buggers!?!? They're driving me nuts let alone ruining all the darn grass!! I've heard watering them out of the holes is the best way.... Hmmm... a project for tomorrow then!

Multiple sclerosis gene cluster confirmed
2005-09-23 22:06:00

A little bit closer.... Have a read here of the release:

"The major histocompatibility complex (MHC) is a cluster of genes that play a critical role in the recognition of cells in the body as belonging to the body, i.e., not intruders such as bacteria or other pathogens.

When this system of recognition breaks down, the immune system may mistakenly launch an attack against cells, as happens in MS. Researchers believe that some genetic variations in MHC genes make people more susceptible to whatever environmental causes also contribute to MS."

More MYELIN! Or Jelly rolls!
2005-09-23 22:24:00

Scientists discover the molecular switch for nerve cells' insulating jelly rolls
Wow, advances happening everywhere this month. Lets hope this one plays out to get better treatments!

Study shows increase in miscarriages if on Interferon therapy
2005-09-26 21:47:00

Not surprising data but extremely valuable information for MS'ers on ABCR's who are thinking about getting pregnant.

"The research team discovered that in a study of 36 women, continued use of interferon therapy throughout pregnancy resulted in a 39 per cent increase in miscarriages, a 30 per cent increase in non-live births and a lower overall birth weight in live births."
Five new mounds of dirt
2005-09-26 21:53:00

Okay, 5 new holes and mounds of dirt to repair in the lawn today. I took some advise from Cathi (and my friend Simon says the same) and decided to put some of our cats litter in the holes to see if that encourages the buggers to go away! Mmm... I'm starting to feel like that movie... Groundhogs day!! Argh!
      Okay, so please, please keep all your fingers and toes crossed for me. I took my car in today for a check-up - oh I guess its called a tune-up in car world. I think I've been researching medical stuff to much lately! I'm bitter about bringing my car in. I just *know* they're going to find something that "really should be fixed". Any bets it'll be 500 bucks once I go pick it up today?

Biogen, Elan seek return of multiple sclerosis drug
2005-09-27 00:15:00

Looks like the new safety results have been submitted now to the US regulators for Tysabri to come back to the market place. No news yet on Canada's process for the drug.

" The companies, which withdrew the injectable medicine in February, said they have asked the U.S. Food and Drug Administration to review the additional safety data within the next six months. That compares with the standard review period of 10 months."