Category Archives: PML

Fathers Day, Multiple Sclerosis, PML, two face tree pic, Tysabri, Tysabri rebound, yin yang, yin yang tree

Fathers Day’s Week Yin and Yang of Tysabri


We had a storm this past week, and the wind blew the rain side ways as it came down.  The effect on the tree in our back yard was striking as it split the face on the tree right down the middle.  It seemed to be the perfect standard for my thoughts on Tysabri, a drug I’ve take to slow the progression of my multiple sclerosis.  It fits my limited understanding of Yin and Yang.

Yang

I was asked in a recent survey about my high school what about my life makes me feel most successful? I went back to my goals coming out of high school, and the first goal was to make enough money for money to never be the reason I can’t follow a dream.  Then from the time A came to live with us, I have been telling my kids, I have nothing more valuable to give them than my time and attention.  The survey came to me on the right weekend, because it reminds me of the real answer for what about my life feels most like success. 

Success is realizing that while my time and attention may be the most valuable things I have to offer my kids, all that I give them is returned to me magnified and multiplied as if seen in some carnival mirrors in a mad house. Their love is the sunny side of the face. 

The time and energy I have been given to spend with them after feeling so rotten my first 9 months after being diagnosed with Multiple Sclerosis have been a blessing.  The drug has enabled the parts of my life of which I am most proud.

(For the Yin continue to the next page)

Yin:
On Tysabri in this article : http://www.medicalnewstoday.com/releases/261719.php

I hate seeing the bit on what happens when a patient stops Tysabri. I’ll grant it was only 7 patients, but the most common numbers thrown about are 1 in 3 has MS rebound. So for all 7 patients to have new lesions in 11 months …(forget that they all had 40 to 70 of them) would be 1 in 2,187. With the average disability score changing by 3 points with the now treatable brain infection (PML) being the rare potential downside of continuing Tysabri, I think the odds behind patients choices on whether to stay on Tysabri may be changing by the week. 

Of course after 78 infusions, I wasn’t thinking of changing now anyway.When I started Tysabri, J and I said give us 5 good years over 30 crappy ones.  As I am 6.5 years in, I find myself more than willing to make the same deal again. Still, it’s a sobering realization there may be more to consider than whether a new treatment is as effective or better than Tysabri.  Simply getting off Tysabri looks like it may bring on an even more aggressive MS.  That is a scary thought when I think about how aggressive my MS was before Tysabri,  long I have been on the drug and the lack of studies about the impact of being on it 10+ years. 

As a set of good foster parents lose their kid back to parents whom nobody but the judge thinks will do a good job raising, it hits home how little time we have with our kids.  Whether we give birth to them, adopt them or foster them, nothing is promised. Furthermore, the possibility of love separated (yin) is always the risk within the yang of love.  As great as the yang of love can be, nature seems to favor balance which I suspect is why the greatness of love seems balanced by the horror of love seemingly heedlessly lost.

Maybe that’s why my favorite coupon in the coupon card book from my daughter is the one for a hug.  Their sadness reminds me to cherish our nighttime rituals, even when I am tired.  How long will we enjoy them?

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depression, NY Times, PML, poverty, Richard Wilkenson, Tysabri

"Statistics are like a bikini. What they reveal is suggestive, but what they conceal is vital"

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Richard Wilkenson cost of inequality:


“Kathryn Edin, a professor of public policy and management at Harvard’s Kennedy School, said in a phone interview and in a series of emails that a major problem with all three attempts to measure poverty ‘is that the poverty level has no real empirical basis — it is not a good measure of how much it takes to survive nor is it a relative measure meant to reflect what is required for social inclusion in the society. The poverty level is most certainly too low. Most people can’t actually live on incomes that hover around the poverty threshold.'”

The second quote was from Aaron Levenstein saying, “Statistics are like a bikini. What they reveal is suggestive, but what they conceal is vital.”
Speaking of suggestive statistics and studies, on Patientslikeme.com, I ran across a reference to a study suggesting antidepressants may be useful in warding off or curing PML, a major risk of taking Tysabri as I have been for the past 6 years.  http://www.jns-journal.com/article

  
Given that Tysabri remains very popular for many making the same calculations my wife and I have on the value of continuing usage despite the risks, it would seem dealing with any signs of depression should be deemed very important.  According to one meta study done a couple decades ago, between 25 and 50% of MS patients become clinically depressed.  Granted, in the past 20 years treatments have come a long way, but everything I read suggests depression is still quite common.  

I guess I now have one more way to guilt trip those who give me a hard time, or at least those who wouldn’t recognize true clinical depression as opposed to situational sadness.  “You’re going to kill me! Don’t you know depression makes me more likely to get PML and die?”  I shouldn’t joke, but… 
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In family notes, we have been battling to get K out of hospital and keep her out as she battles a stomache virus for the past 5 days.  I’ve never seen so much come out of someone so small.  Sometimes one has to smile even in the face of gross:


 I have no idea why this post has such a funky presentation as it was written in word and copied over the same as the past 100 posts. 
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