Wall of Hope

'Wall of Hope', Walk MS, San Diego April 2013

I intend to fight

Dear Tysabri

Thanks for no new lesions! 

Thanks for nothing. No, I mean it. Thanks for the last 12 infusions without incident. Well, except for the heart palpitation that one night. Meh. Thanks for the latest MRI scan which revealed no new lesions! And thanks for no relapses this past year! Thanks for giving me the opportunity to make new friends in the infusion room. Thanks for working so well in treating my MS.

Muchas Gracias!

C.

P.S. Weird, I know, to write a thank you note to a drug. I’d be remiss if I didn’t recognize the fact that not everyone can take the big T. Either because of a positive test result for the JC Anti Virus or simply because it is soOoOoO expensive/overpriced. If you are able to go with Tysabri, be sure to inquire about their financial services through Active Access.  

P.P.S. If you’d like to read about how I made the decision to go with Tysabri, check out this post. I was presented with four drugs when a new lesion appeared last year and it was not easy to sort through everything! 

Top 10 things that happened during MS Awareness Month

It’s a wrap! March 2013, MS Awareness Month, is over. And, so many important things happened in the MS community. Like, really big things!

1. The biggest news? The FDA nod for BG-12. Whoop! Whoop! This is going to make a lot of MSers very, very happy. Why? Because this is another oral treatment for RRMS. Read, no injections and no infusions. Be sure to talk with your neuro about this, to see if it’s the right med for you. Good luck with the possibility! P.S. I think they changed the name to Tecfidera, something to be aware of, if you try searching out info on Google.

   

   Whoop, whoop! FDA nods Tecfidera!

2. Jason Da Silva met 100% of his goal to help get his documentary, “When I Walk”, into theaters! Another whoop, whoop! Jason’s film is an emotional and inspirational film about living with MS and disability. It’s an incredible achievement and I, for one, can’t wait to see it!
   
   

   

   "When I Walk" meets 100% of goal! (c) http://www.wheniwalk.com
   
   

   "... honestly, the making of this film helped get me through the past seven years. As my physical body changed, it acted as an emotional and creative support system..." - Jason Da Silva

3. We know a lot more about the relationship between salt and MS. Who knew? Read here about the suggestion that dietary salt can stimulate the development of MS. I know, I know. It’s a study about mice, not people, but still serves as great foundation to fuel additional studies to better understand the correlation.
4. Our friend Kate Milliken is putting emotion first in the MS community through her work on My Counterpane. She’s “… building a tool called the Moodifier for patients and caregivers to connect them by their similar illness and how they feel about it.” If you are interested in supporting this cool project, you may do so here. Neat stuff, right?
5. And, another one of our friends, Amy Gurowitz, has Robbie Benson talking about MS Soft Serve. Amy’s doing great work in rallying support for her project, MS Soft Serve. Please take the time to check out what she’s doing: http://www.mssoftserve.com.
6. The 13^th Annual UCSD MS Symposium in San Diego was a great event that featured two amazing people at the podium. The overall message? First, Dr. Jody Corey-Bloom talked about symptom management, including understanding the side effects of your meds before attributing what you feel to MS. And, second, Dr. Timothy Vollmer talked about new paradigms in MS treatment and advised the audience to “…not treat on where are you today with your MS but based on where you night be at age 65.” Now if I can just get a copy of the presentation. So much good info but impossible to jot it all down in my notebook!
7. Multiplesclerosis.net celebrates huge statistics during its month of debut. This amazing new site reached over 16,000 “likes” on Facebook. Whoa.  Do go out there and check out it out. It’s a great space. And, who knows? You may see a friendly and familiar face...me!

   

   Check out this amazing new site! http://multiplesclerosis.net

   
   
8. One a personal note, my latest MRI showed no new lesions! Yes! Tysabri? Keep up the good work.
9. And, my latest JC Anti Virus test results were negative. Tysabri? Carry on and get down with your bad self.
10. Yet, my vitamin D levels are too low.  This means more 15-minute sun sessions, but certainly not running around naked.  

So as we bid farewell to March 2013 and MS Awareness Month, let’s not end our effort in increasing awareness about Multiple Sclerosis. Let’s continue to get out there, spread the good word about how to live a positive life despite the challenges of this debilitating disease. Let’s continue the dialogue about living with MS. You with me? 

And, if I missed important news this month, jot me a note here on the blog.

Best always,
C.

Wednesday Wisdom - Don't Give Up

Courtesy of Los Angeles Chinatown Firecracker Run via Facebook 2013