Vitamin D, the sun and MS. What's the connection?

I love maps so it’s no wonder that I love this new interactive tool that I came across recently. A tool that visualizes information on MS prevalence rates, including Vitamin D levels and the intensity of the sun. And it does so by allowing the user (that's you!) the ability to select a variable and compare distribution across the globe. Have I mentioned I’m also an analyst? This makes me love this even more. Maps and data? Cool.

The patterns aren’t always clear when I play around with the maps but one theme does emerge. MS is more prevalent in certain geographical areas, areas that tend to be further from the equator. What does this mean? Less intense sun may mean a higher risk for MS.

To see the tool for yourself, click the link below.

Visualizing the Data: MS and Vitamin D

Best always,

Christie

Team Luca Survives Debut at Bike MS

Yes, yes. I realize that pre-October 21 2012 I was extremely hyperactive with my Twitter posts asking for donations and generating excitement about the big MS Bike event. And then I dropped off the face of the earth. That’s what happens when you sprain your ankle and then head off on a European vacation. Geez.

Here are some snaps of the ride taken with my phone. No, no. No photography while I rode my bike. Good grief. I already had to contend with a sprained ankle.  Yep. I hurt my ankle the day of the ride, just minutes before we started!  Walking around in bike cleats on mossy wet sidewalks proved to be very dangerous for this MSer! Determined not to let it get me down while sprawled on the ground, I got up, hobbled to my bike, clipped into my pedals (OW!) and rode away with Team Luca.  For 30 miles.

I only fell once. 

C.

Luca the Sock Monkey excited for BikeMS !

Pre Race Day preparations

Bright and early! Good morning Team Luca!

Team Luca lining up!

Sister Power!

Luca

I call it "Orange Tutu with Palm Trees"

Team Luca snacks at rest stop

Team Luca exhausted at finish line!

She rode 30 miles on a sprained ankle?! What?!

Getting wrapped !

Team Luca portrait (pre ankle incident)

A Special Message from Luca the Sock Monkey

Shemar Moore talks about MS Bike Ride for his Mom

What an inspiration! The $15,000+ his team raised for MS services and programs will go a long, long way. Thanks Shemar Moore! 

Obstacles Are Great Incentives

“Obstacles are Great Incentives” as Jules Michelet was quoted as saying. My obstacle du jour? My incredulously compromised left eye and how to adjust for it during my bike rides. I will not let it interfere.

Why?

I love riding my bicycle. It gives me a great sense of freedom to feel the wind against my skin as I pedal my legs off whizzing along at speeds up to 20 mph. Ha, for me this is fast! How those boys of the Tour de France reach speeds of 40 mph I will never know. And, side bar, for some strange reason, I seem to be able to straighten out my balance issues when sitting in the saddle. Must tell my neuro about this during my next exam.

My left eye, however, gives me a lot of problems when I ride.  I’ve got optic neuritis in said inflicted eye and as my body temperature rises, my vision becomes more compromised. This makes exercising challenging, especially when riding my bicycle. As I ride further and faster, I become warmer and warmer and my eye gets worse and worse. Annoying. Really annoying. This is a problem for obvious reasons.

Yet….

I love riding too much to let my left eye get in the way of my yellow jersey cycling dreams so, my solution? A mirror. I know, I know. It seems so simple. But I’m not talking about just any mirror. You see, I am not a fan of the type of mirror one sticks on a helmet. I need to focus when I ride and having something dangling off my head would be very distracting. A moving mirror on my head will cause me to niggle about sudden vertigo attacks while cruising along at 20 mph. That would not be good.

This mirror I found (see photo) slips right into the handle bar and is nearly undetectable. The best part for me is that this allows me to use more of my right eye to help when I need to see behind me. Otherwise I might be forced to turn to my left to look over my left shoulder using only my left eye to see who or what is following me (yes, I’d like to think most riders are behind me!).

Brilliant little mirror! 

How’s it working so far you might ask? Brilliantly. Not only can I see better, that small little mirror has given me so much more confidence on the bike. It seems so small but it is a huge deal. That little mirror gave me the strength and courage to enter the Bike MS Bay to Bay event as captain of Team Luca. I am riding more now than ever. And, I feel somewhat liberated because I removed an obstacle and can see so much better!

Now I can really be warned of who is (trying) to ride up behind me to grab that yellow jersey off my back!

Look out.

Best always,

Christie

P.S. to get an idea of what optic neuritis is and how some of us MSers see through our inflicted eyes, check out this picture. 

Welcome Aubagio

Some big news this week out of the FDA this week! On Wednesday, the Food and Drug Administration approved a Sanofi pill to treat multiple sclerosis (RRMS). This makes it the second oral therapy player in the MS drug market. Not too shabby.

The good news?

• Research from clinical trials says that the relapse rate for patients using Aubagio was about 30% lower compared to those taking a placebo (or, sugar pill).
• It’s cheaper. Sanofi states that the drug is estimated to cost about $45,000 a year, which is lower than Copaxone, Avonex, etc. Aubagio is guessed to be about 22-28% less expensive than Gilenya. 
• It’s a pill. Options are good for those living with MS. 

The not-so-good-news?

• The drug may cause fetal harm and, as such, women must take birth control during treatment. And…
•   …the boxed warning includes potential liver problems, including death, and risk of birth defects. 

I for one am grateful for new MS drugs coming out on the market and that MSers have more options. Granted, it goes without saying, I would much rather it be that no one get diagnosed any further and that we just land on a cure. 

What do you think about the news of Aubagio's launch? About MS therapy in general? I would love to hear from you. 

P.S.

To read more about Aubagio, check out these articles:

1. Press release from the FDA (read more here)
2. Wall Street Journal (read more here)

Best always,
Christie

Gossip from the Peloton

Well, all right. Our peloton may only have two riders but we’ve got a lot to say!

First things first. Thanks so much for your support thus far! We have some very thoughtful friends and family out there and we are so grateful for your donations to the National MS Society. Thank you!

Have y’all heard of Phil from the Amazing Race? He is one of our inspirations for doing the Bike MS. I tweeted about Team Luca’s debut and Phil re-tweeted the message! How freakin’ awesome is that?! He’s like my BFF now. Just sayin’. If you haven’t heard about his film “The Ride”, do check it out. It’s absolutely incredible. Back in 2009 Phil rode his bike across the country and raised $500,000 for the MS movement! "The Ride" is a documentary about his journey. 

In the meanwhile, I came across this video of a really fascinating product designed by two Swedish women, The Invisible Helmet. When you have 3 minutes to spare, check it out. As they say in their video clip, “cars are so yesterday”. It’s….interesting.

For those of you interested in joining Team Luca, we’re ready for ‘ya! You can sign up through this link. And, you’ve got options. 150 miles too much? You can always elect something less intense like 100, 30 or 15 miles. You can join Team Luca’s peloton along the route. There are some fees involved and here is some information.

• The 15-mile ride has a $25.00 registration fee. Plus, you are required to raise $150.00. That’s easy!
• The 30-mile ride has a $60.00 registration fee. You are required to raise $400.00. Again, that’s easy!
• The larger rides (100, 150 miles) involve bus rides and all that. You can find more information here.
• Can't ride and would like to make a donation? Click here to do so. 

And, just for fun. One of our fans (wink) shared this photo with us. It’s a bike shop in Germany. I don’t know where it is but sure do love this photo. There are lots of Oma bicycles hanging on this building! Smile. This brings up lots of memories of my Oma riding her bicycle in Holland, until she was in her early 80's!

That's it for now. We are busy riding our legs off in this fight against MS. Be sure to check back as I will post updates throughout our "training". 

Best always,

Christie