The Speech

The night before the Martha’s Vineyard, I was lucky enough to speak to the participants at the kick off event. I was a little nervous and didn’t say everything I wanted to say, but it went something like this:

Welcome to MS Ride the Vineyard 2008. I am visiting today from Salt Lake City, Utah. I grew up in New Hampshire and moved to Salt Lake four years ago to find deeper snow. Being here today is exciting for me. This is truly a full circle moment.

Two years ago in the Spring of 2006, I was training for the MS 150 in Salt Lake City Utah. The owner of my company has MS and inspired me to raise money for the NMSS. He has been in wheelchair for more than 20 years and I was going to ride for him. John Shuff was my face of MS. During that time, I had just returned from a trip to Germany and what I thought was a little jet lag turned into a lot of vertigo. I had experienced vertigo before and I figured it was just some type of ear infection. My doctor thought the same thing. As the weeks progressed, I couldn’t walk a straight line let alone ride a bike. Two months later, I still felt like I was stumbling out of a bar whenever I stood up and went back to the doctor In the beginning of July, I had missed the MS ride, still could not get on my bike and was diagnosed with MS.

I started MS therapy and spent a few weeks, in my mind, putting myself in a wheelchair, selling my bike and my skis and picturing my future as forever changed. What I didn’t know then is that my MS diagnosis would forever change my future in the very best way.

In August, I went to my first meeting at the local MS society chapter for the newly diagnosed. My husband and daughter and my parents came with me. Not only did I learn more about MS and all of the services that were available to me and my family but I met a pharmaceutical rep from Biogen Idec that helped me change the course of my disease. I asked him a lot of questions and started to take his answers more seriously when I found out that he had been living with MS for more than eight years. And living well. He was racing his bike, working a high stress job, traveling and his wife had just had her second child. Linde Smith became my new face of MS. I took his card and a free Avonex water bottle and left.

I called Linde a week later and asked him if my husband and I could take he and his wife to lunch. He agreed and my husband I learned more about Avonex and Tysabri but more importantly what Linde and his wife did to make MS work for them. It was a personal story that we needed to hear. From there, I went online to find stories of more MS success stories. I couldn’t find all of the answers I was looking for in a blog so I started my own. I knew I had an important message and important questions and wanted to put them out to the universe in a very world wide web kind of way.

During the first six months of my diagnosis, I went from wheelchair thoughts to fighting for my life. I knew I wasn’t going to die but I was going to fight for the future I had planned, for the lifestyle that I dreamed about. I changed my diet, my sleep habits and the way I responded to stress. The side effects from the interferons made it difficult to feel great but I knew I was making progress.

In July 2007, one year after my diagnosis, I had my first Tysabri infusion. Today, ten infusions later, I feel better than I have in ten years. I still have occasional MS symptoms but my mind is clear and focused, my body is strong and I am ready to fight.

Two weeks ago, a women that reads my blog called and asked me to lunch to talk about Tysabri and how I was doing so well. I was thrilled to help and to make a new friend and to know that I could make a positive impact. I was her face of MS.

So how as MS changed my life for the best?

  1. I take better care of myself.
  2. The relationships with my friends and family have become unbreakable. We always loved each other but now we appreciate each other in a very different way.
  3. I have met the coolest people in the MS world that I would not have had an opportunity to meet without this diagnosis.
  4. I am more hopeful and determined than ever.

Last year, my sister in law, Anne- Marie started TEAM TLC and raised $5000 at Ride the Vineyard 2007.Team TLC was awarded “Rookie Team of the Year” Anne Marie has held my hand through so many things and been a vital part of my team, and I knew I had to be a part of hers. I have been training for this ride for two years and I am so proud and honored to do it with all of you.


You are my new face of MS!

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5 responses to “The Speech

  1. This was such a lovely post and as always left me feeling inspired. I’m so glad the ride went so well for you 🙂

  2. congratulations on the ride and the speech. you are awesome.

  3. This was such an amazing experience for me to have you join us! I spent the last two years riding this bicycle for you and I have been so inspired by your motto to ride “Because I can”. I only hope we have many more rides together, for as long as we both can! I just hope they’re not all as cold, wet and windy as this one was! I AM SO PROUD OF YOU FOR TAKING ON YET ANOTHER CHALLENGE AND COMPLETING THIS RIDE WITH US! You are my hero! Love you SILLY

  4. Most excellent!

  5. Hi Courtney,

    I had never seen your blog before, and wow is Tysabri that good? Everywhere I go I see amazing stories. I have MS the past year, and I may have to go on Tysabri, in fact my neuro has had good results, including one remarkable result (a patient out of a wheel-chair for months now).

    Also there are great videos on YouTube, including a few new ones the past few days. Sorry, I have lost the links, but you can do a search easy enough.

    Perhaps even you should get the word out on YouTube, it works marvels for us girls too, not just the boys. I sure would love to see an infusion, especially the preparations, as I know some patients have to pre-medicate for things like rash and maybe “shock” (whatever that is, I would take it over MS any day).

    Well thanks again for your nice blog, I feel better for the last 15minutes reading it.

    Martha

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