Have You Been to the Mountaintop?

  Take my Hand…The song Martin Luther King requested be played just before he was assassinated.
Martin Luther in his last speech spoke of the time he lived being the one he would choose. If offered the chance to live with and see the great philosophers of Greece, or see Lincoln sign the Emancipation Proclamation or even hear the speech where a president of a struggling country declared “We have nothing to fear save fear itself,” still he would choose to live in the last half of the 20th Century. He felt as if he had a duty having been allowed by God to see from the mountain top. He spoke of encountering the hoses and not fearing for he knew water…He was able to accept his lot, his role in life. He spoke with a sort of a acceptance of hardships inflicted upon him and those he loved. He even accepted the threats and the injuries, and ultimately he was killed, but as I listened to his last speech I never got the impression he was giving even an inch of himself away in his acceptance of what fate decreed. To see the speech,
Acceptance is something I’ve not come close to achieving. A large part of me looks at my MS and tries to pretend it’s just another obstacle to be ignored and denied until I can no longer do so. For what it’s worth, this attitude drives my wife nuts! I understand why, it’s just if I stop when I first feel signs of my body stressing, I may as well stay in bed. For me, stopping to ask for and receive help for every inconvenience would require me to stop being whom I wish to be.
Why define yourself by what you can and can not do? My first thought was “Well then how are we to define ourself?” The best I can come up with is “Why not define yourself by your dreams, what you attempt, and by whom you inspire?”
Remember, so much can be and is done by those who never stopped to consider why they couldn’t.
I wish I had MLK’s view from the mountain. For now, I’m happy to live now with the hindsight of history to let his words and deeds along with the words and deeds of all those who came before me inspire me.
Have you ever stopped to think who makes up the mountain of your inspiration? Parents, holy men and women, and thinkers of by gone eras have all added to the mountain I see before me. Thinking of the view I imagine if only I could climb it. However, I find myself more often than not wandering through the darkness holding a torch hoping to find others to ease the loneliness of the dark. http://thelifewelllived.blogspot.com/2007/07/year-into-it-all-when-i-first-began.html
I envy MLK’s dream and vision. I also find it interesting to think MLK’s I have a dream speech is the one for which he is most famous when I think the mountain top speech is every bit as good and significant.
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If We Don’t Aspire to Normalcy, Why Do We Wish It for Our Kids

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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