Monthly Archives: January 2013

acceptance, American Girl, Financial Times, MS Medications, MS research, Patients Like Me

If We Don’t Aspire to Normalcy, Why Do We Wish It for Our Kids

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As individuals, many of us with chronic illnesses are prepared to live different lives from the main stream whether it means accepting physical limitations in the way we do things or odd, sometimes questioning looks because of our appearance.  Still, I don’t know of anyone who wishes their kids to live outside of Wellville, where all of the healthy spend their lives.  Why do we try so hard to make the case for our lives being as good, as full and then wish for other types of lives for our kids?
I was forced to ask myself this question as A relished getting an American Girl doll as a Christmas present from my mom this weekend.  In the past, she has refused to play with dolls saying only they scared her.  Meanwhile, she was playing with all of her stuffed animals like most girls play with their dolls.  I used to wonder if there was something comforting in having them be so unlike her.  It’s easy to say I want her to feel comfortable with herself, and I worry the creepiness she felt with the dolls reflected a discomfort with herself.  However, I wanted her to like dolls also because they represent another way for her to bond with kids her age.  If given a choice, I would put her as firmly in the Land of Normal Life.  Why, I don’t know other than to say the bit about self image and bonding with her peers feels incomplete when I try to explain the why I felt happy to see her playing with Rosy (her name for her doll).

On the MS front, I was reading the Medical Letter published by The Medical Letter Inc., and they quoted a randomized double blind study from Europe showing BG-12 reduced relapse rates between 53 and 48% versus placebo.  The range is because some patients were given 2 doses a day and others 3.  Noteworthy is the part about it significantly reduced the rate of disability progression which is the first potential front line MS drug to do so.

It also wrote up Campath(Lemtrada) which had a 49% reduction in relapses.  During the 2 year study, 20% of patients treated with rebiff sustained accumulation of disability compared with 13% who were treated with Campath (Lemtrada).

The article was actually about Teriflunomide, but with only looking at success inhibiting MS progression, I didn’t see a lot to recommend it over the existing front line drugs other than it is another oral medication.  BG-12 actually looks like a mid road between the existing front line meds and Tysabriwithout as much known risk.  

I would link the article, but it requires a subscription.  I was given a copy of it by my sister-in-law.

(To continue reading proceed to the next page))

On the cool to me side, two things happened this week.  I finally submitted my data request to patientslikeme.com in an attempt to get data for a study on the seasonality of MSsymptoms.  I mentioned the study I would like to run in an email later revised back in April  http://thelifewelllived.blogspot.com/2012/04/meaningful-success-or-failure-both-only.html.  I only just now had time and energy to revisit the study proposal.  I changed the original to define the 5 symptom categories and specify I would only look at the 100 most frequently reported MS symptoms.
Secondly, I was interviewed by a reporter for the Financial Times of London on how social media like Patients like me (linked in my useful sites list above) influences my choice of MS treatments.  We talked about it as a source of data for studies patients, and how it is a useful tool for patients tracking their medications and conditions.  The issue of privacy came up as patients are willingly giving up personal information, but I still maintain the public good is well worth the risks.  Of course this is easy for me to say as I work in an environment where I don’t have to hide my MS.  As a side note, I find it a little funny after 15 years working producing and analyzing economic data to have my first interview with the Financial Times be about my postings and use of a web site I use to learn about my MS.    

Note in response to a few requests, I have added the follow by email to the bottom of this blog.

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chronicaly ill children, leadership, parenting, skating

What Should Chronically Ill Kids Expect From Their Parents?

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Two stories from the past couple of weeks over the Christmas break illustrate a few of the things our kids need as they wander through life.  Kids need us to teach them what is expected of them, and they need us to give them a comfortable context to place their experiences.  They need us to build them up and give them the strength needed to deal when the world is not as we would wish.  At some point they need the strength to make and shape the world as they and we would wish.

The first story begins with my son O feeling very upset because he felt like his cousins never let him decide how they were going to play.  To their credit, the little kids recognized this and had a very mature response telling him after lunch he was to be “king, deciding what they were to play and how.”  At lunch, he came over to me very excited, almost beaming, to tell me how upset he had been and what his cousins had decided.  I reminded him being “king” has some big responsibilities to which he responded with an air of surprise, “like what?”

“If a leader tells all who follow him to go jump off a cliff, how many does he lead?  Either they decide not to follow his orders or they jump off the cliff. Either way he is left with no one to lead.  If a leader tells everyone to do what they must even if it’s not the most fun, he can continue in his role.  If a leader tells people to go do work, feeding the animals and cleaning the table, then at the end of the day everyone sits down at the table happy to eat…So make sure everyone has reason to be happy while you are ‘king,’  and maybe they will continue to listen to what you want to do.  Even as king, it needs to be about more than just your wants.”

He responded being king seems like a lot of work, and he wished he was god.  Hmmm, this seems to be a trend in conversations with my kids of late.




(Continue for the second story)

The second story involved my daughter who has some serious coordination issues.  I’ve always thought they stemmed from her stroke, but I have no proof.  For a long time, her legs were different widths, and we worked for a long time at the playground to work on the strength of both legs with a favorite being the “giant’s stairs”  where the kids have to take big steps up to a slide.  Even with the legs being more symmetrical, she still runs with an arm tucked and her bike still needs a training wheel.  Yes, I meant training wheel not training wheels as only one is ever used.  The other still looks like it did coming out of the box as it has so rarely touched the ground.

In any event, the story in question came as the aunts and uncles planned a day for the 8 cousins in town.  It was decided all the kids should go ice skating.  When we point out our daughter who worships her cousins wouldn’t be able to ice skate, we were told, “She’s different from the other kids.  She’s going to have to learn to accept it.”  From a kid’s perspective, a large part of why the cousins were here was to see and play with them.  To have them all go without her and do a fun activity she would love was crushing.  While some of the extended family may have been right to say it was only a couple of hours, it was a couple in the middle of  the day, and she never did get to hook back up with the majority of the kids that day as the family split up doing separate activities after ice skating.  The tears were only staunched when mom told her we could go roller skating next weekend where she will have additional supports, and mom can take her around the rink.  Mom is a good skater, but can’t wear ice skates.  Heck, during our first few outings prior to dating she spent time picking me up and picking out splinters after I frequently fell trying to roller blade with her (trying to spend time with the beautiful woman but feeling like a klutz).

The last story is really about the parent’s role shaping the situations encountered from what is currently undoable back to “What we can do.”   It seems our role to help them define their possible, but to the extent possible to give them a push back against all who would pigeon hole them as handicapped who will always be different unable to participate in everything. 

Even if it’s true, a kid shouldn’t have to learn it at 7.  I love my wife’s answer to define the moment in terms of the fun we can still have and the things we can yet learn to do.

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