Wednesday, June 24, 2009

Hot heat, and cold chai

It's too hot!

I know everyone with MS understands what I mean when I say it's too hot. We had a video shoot today, and the added stress of carrying the equipment through the 80ยบ heat was almost too much.

But I must say the video is coming along very well.

We're working on a volunteer video project for the National MS Society, dedicated to recruiting more volunteers and appreciating all of the hard workers out there.

This weekend is Colorado's Bike MS - just a few days away! I'm a little indimidated to be a Crew Coordinator for the first time, but it should be a great weekend. I'm in charge of Team Village and can't wait to see all of the decorations/events teams are planning for their tents. It's going to be wild.

And maybe a little too hot.

Monday, June 22, 2009

Our Space: Living with MS under age 30

Living with MS can be hard, but having friends with MS can help bridge the gap between feeling alone and realizing that we're all in this together.

Here's an article the MS Society published about me in the "Our Space" section of Momentum Magazine - it's just my story, how I got where I am, and a little history about me.

http://www.nationalmssociety.org/multimedia-library/momentum-magazine/back-issues/momentum-spring-09/download.aspx?id=5585

Disability 101: Changed and on my way to D.C. | SummitDaily.com

Here's a great article about a man with MS and what he's doing to improve his self confidence with MS, while trying to educate others about the capabilities of people with disabilities.

http://www.summitdaily.com/article/20090621/NEWS/906219985/1078&ParentProfile=1055

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Wednesday, June 17, 2009

MS Support Groups 2.0

Last year I interviewed a woman who created a support group on SecondLife for people with MS to talk and support one another for the National MS Society (read the article here). I've joined countless groups on Facebook and Spark People to network with other people who are like me.

But I still don't feel any closer to understanding how we all cope with the disease.

In a world of Web 2.0 and instant access to information, why don't we have instant access to people? I know, it's the same old story. But I envision a better way.

I want to meet young professionals with MS! I want to meet people who, like me, cope with the illness in extraordinary ways and don't suffer many symptoms because of the advances in technology.

I learned yesterday that Colorado has the highest incidences of MS in the U.S. I just moved here in August, so I certainly don't blame the state for my condition, but it is curious that there aren't more support groups to go around.

Across the nation there are many groups just like this, but it feels like Denver is missing the mark. I plan to start my own support group with the help of the National MS Society - I just hope there's a market for it!