Woof, meow, tweet…the benefits of having pets in our MS life

Dog, cat, chinchilla, hamster, ferret, fish, bearded dragon, parakeet, pig, monkey – whatever your choice, pets really make us feel good, better even, as we live with chronic illness and disability. Not only can they provide physical assistance, they also warm our hearts and make living with MS a bit easier more >>

This cutie is amazing at making me feel
better when those bad days show up

Photo shoot highlighting that Multiple Sclerosis is only part of the "Big Picture"

What great fun! This past week I participated in a photo shoot for Health Central’s Big Picture project. Have you heard of this? It’s a very cool, Humans of NY-ish approach to showcase that living with chronic illness is only part of the ‘bigger picture’ of our lives. In my case, we snapped pics of me riding my bicycle, one of my hobbies (and there are plenty) that I am really passionate about. My health story will be highlighted which is that I try my best to live my life by doing things that I really love, including riding my bike as fast as I can, despite Multiple Sclerosis.

The morning of our photo shoot, we met photographer Kent Mercurio at a little coffee shop in sunny Coronado, California. We chatted over treats and coffee while we got to know each other. We talked about a lot of stuff including the diagnosis process of Multiple Sclerosis, my journey living with the disease, and, of course, cycling and photography, my two favorite hobbies. Our chat was really nice because it set a relaxed and friendly tone for our photo shoot. Kent is a really nice guy.

The shoot consisted of several shots of me riding (I was really careful not to run Kent over in the process – we had a couple of close calls!), posing with my bike, and a few contemplative portraits. We even managed to squeeze in a few shots of Luca the Sock Monkey who is our mascot for Team Luca in the annual Bike MS Bay to Bay event. Kent shot with sunny San Diego as a backdrop – the bay, the palm trees, sail boats, San Diego city skyline - I can’t wait to see how the photos turned out.

Sunny San Diego!

Kent capturing my love for cycling

Close up! 

Great back drop of sunny San Diego

Luca the Sock Monkey! 

The photo shoot also gave me the motivation to hop back in the saddle after a wee break. Last year was a tough one for me personally and I did what I often do when I am stressed or face life-altering challenges – I put the bike aside. This photo shoot turned things around for me and cycling around Coronado that day helped me remember that, yes, I have a serious neurological disease, but, you know what? I choose to ride on. I choose to do the things that I love. I choose to live a happy life despite it.

P.S. a HUGE thank you to the team at Remedy Health Media, Health Central, and Kent Mercurio for giving me this opportunity and inspiring me to make 2016 the year of cycling, despite living with Multiple Sclerosis – you guys rock!

Take care,

Christie

For more information, please check out the links below:

• “Why You Should Share Your Story about Living with a Chronic Illness” www.healthcentral.com
• Remedy Health Media: http://www.remedyhealthmedia.com
• Kent Mercurio Photography: http://www.kentmercurio.com

7 great things accomplished by patient powered iConquerMS

I am so delighted to share that the iConquerMS initiative has made a lot of progress these last few months. Membership keeps rising and a lot has been achieved in a short time. What a great team to be a part of!

The focus continues to be facilitating research on stuff that matters most to us, folks living with Multiple Sclerosis. And, it involves MSers across the entire process: idea building, collaboration, protocol development, project results, and sharing of final research results.  Pretty cool, right?

So, I thought I would share some of the recent highlights. Here are seven great things accomplished by iConquerMS so far:

1. Launched the new data collection and patient engagement portal
2. Registered over 2,250 people living with Multiple Sclerosis
3. Collected a lot of health data – from about ½ of those registered
4. Garnered support from MS clinics, neurologists, MS nurses, MS advocacy organizations, pharmaceutical companies, and collaborators
5.  Created its first research project that will focus on how folks with MS get insurance coverage
6. Collaborated with PPRN (patient powered research network) on a study proposal to examine the effects of depression, anxiety, and other mental health issues in folks with Multiple Sclerosis
7. Planned four ‘Research Studios’ events, which will bring together small groups of MSers and researchers to brainstorm on research topics. These are scheduled to launch this fall 

Of course that’s not all as the full list of accomplishments is much longer. Also, several research projects are underway, all at different stages of planning and ideas keep coming in from those MSers registered - teams are very busy!

iConquerMS puts people with Multiple Sclerosis at the center of research in the fight against MS. We’d love for you to be a part of this so please join us today by clicking on the link here: https://www.iconquerms.org .

Take care,

Christie

Perhaps I am stronger than I think

Perhaps I am stronger than I think. Thomas Merton

The day I met Jack Osbourne

A couple of weeks ago, we had the honor of traveling up to LA to attend the Race to Erase MS Spring Forum and Expo on behalf of iConquerMS. We drove up the night before and stayed in the same hotel where the 22^nd Annual Race to Erase MS Gala was happening.

Everything was a buzz as guests arrived for the Gala that night. With the hope to catch a glimpse of some Hollywood stars, we hung out in the hotel lobby bar to watch the action. As you might guess, the excited noise of laughter, chatter, music, and clinking of glasses filled the hallways.

We saw a few stars come through the crowded lobby and head out to the orange carpet: Lea Thompson (of Back to the Future fame), Anne Heche, who later introduced the live auction which included a gorgeous 2015 Aston Martin V8 Vintage GT (vroom, vroom!), Ne-Yo the rapper (truth be told, we didn’t really know who he was, just got the sense that he was famous due to the patrol around him), Rumer Willis, and, Tommy Hilfiger, who was the event’s Honoree. Eventually, we tried to sneak down to the orange carpet area but it was impossible to see anything as the Osbournes had just arrived when we did. Flash bulbs and people everywhere!

We later learned that over 1,000 people attended the event with tickets ranging from $1,000 - $2,500. The car? It went for $150,000! All together, the event raised $1.7M with proceeds going to MS research and therapies. That’s pretty awesome.

The next day was our chance to talk about the importance of iConquerMS and meet so many wonderful people. This includes Nancy Davis, the founder of charity event and Race to Erase MS, and Jack Osbourne, who was on the Spring MS Forum panel. Later, I pretty much chased Jack down like a crazy person as I caught him briskly walking through the hall but he was really, really cool about it, especially once I introduced myself as a fellow MSer. He was nice to snap a photo with me and kept it real as I thanked him for being so honest on the panel about his positive attitude despite bouts of occasional depression.

Here are some shots of the event and notes about the pictures. Starting on the bottom right corner going clockwise and finishing in the center square:

1. Anna on the orange carpet at the Race to Erase MS Gala
2. The amazing panel, including Nancy Davis and Jack Osbourne, who covered topics such as the latest therapies for MS and engaged in an open dialogue about depression. Did you know that 50% of MSers are clinically depressed? And that the third cause of death with MSers is suicide, due to depression? We need to talk about this more
3. Anna has the power to conquer MS – yeah!
4. At the iConquerMS table, spreading the good word
5. Me and Jack O. I appreciated his candidness during the panel discussion of depression amongst MSers. He talked about times when he enters the “jar of shadows” yet encouraged everyone to be positive and live a healthy lifestyle
6. On the orange carpet with my limited edition Top and Derby Chatfield walking stick in MS orange
7. Surrounded by MS orange balloons at the Spring MS Forum and Expo
8. I, too, have the power to conquer MS
9. We were pretty excited to step out onto the orange carpet although all the stars already left the area by the time we snapped this! (center photo)

It’s fairly obvious that we had a great time and look forward to next year. Who knows? Maybe you will see the two of us actually walk the orange carpet, amongst the stars, as we all work towards curing Multiple Sclerosis.

If interested in supporting Race to Erase MS via the “Orange you Happy to Erase MS” campaign this month, check it out here: http://www.erasems.org/may-ms-awareness-campaign/. Proceeds of the campaign go towards some of the nation’s top MS research centers

To join the iConquerMS initiative, register on the site here: https://www.iconquerms.org/. Submit your ideas, information, and become part of the heart and soul of iConquerMS.

Take care everyone,

Christie

LA artist raises awareness about MS through gorgeous mural

I recently came across this CBS report that highlights LA artist Lydia Emily. Lydia created this amazing mural in downtown LA, hoping to spread awareness about living with Multiple Sclerosis.

Have a watch and be prepared to be inspired!

You’re invited to share your MS inspired tattoo with Healthline.com

Getting inked can be a powerful reminder that you are stronger than your MS, and a great way to raise awareness. While I don’t have a tattoo myself (reason being is that I cannot decide for the life of me what to ink myself with – I am forever contemplating the perfect design), I think what our friends over at Healthline are doing is pretty cool. They are hosting the “My MS tattoo” campaign and are looking for tattoos inspired by your fight with MS.

Here’s how to participate:

• Send a clear photo of your tattoo (at least 285x285 in .jpg or .png format) to nlascurain@healthline.com with the subject line “My MS tattoo” by April 17, 2015
• In 90 words or less, describe the inspiration behind your tattoo
• Please identify if you'd like your name published or not
• Healthline will then publish them and share with their Facebook community

When describing the inspiration behind your tattoo, think about these questions: What does it mean to you? Why did you decide to get the tattoo? Was there anything special that motivated the design?

Have fun and I look forward to seeing your MS inspired tattoos out on Healthline.com. Perhaps seeing yours will inspire me to finally decide on what my tattoo should look like! 

Take care,

Christie

P.S. check out these tattoos, inspired by MSers journey and fight against Multiple Sclerosis: 

http://www.healthline.com/health-slideshow/multiple-sclerosis-tattoo-winners#2