I first met Brian Moore-Ward through the MS blogosphere in 2008. He was newly diagnosed with MS and I was a new patient advocate, sharing stories and information about MS in the early days of health social media. Brian’s words of gratitude meant the world to me and inspired me to continue reaching out to help others living with MS.
Brian’s spirit of gratitude makes him the perfect spokesperson for the #MySupportHero campaign launched by Biogen and MSWorld.org to celebrate MS Awareness Month. I had the privilege to speak with Brian about #MySupportHero, support partners, and resources for people living with MS.
Brian was diagnosed nine years ago with relapsing-remitting multiple sclerosis and reports symptoms of numbness and tingling, optic neuritis, and general loss of feeling throughout the body, and fatigue. Lots of fatigue. “I can fall asleep at the drop of a dime,” he says.
When you were first diagnosed with MS, who became your greatest support partner?
“My husband, Charlie. When I was first diagnosed obviously I didn’t know anything about multiple sclerosis. So when I would go to doctors’ appointments, Charlie would be the one that was actually listening to all of the information and doing all the research. Without him I don’t know how I would have gotten through any of this. And even continuing today, he probably knows more about MS than I do. So he’s an amazing Support Hero and I don’t thank him enough. I don’t think he realizes how much it helps me with the disease, and that’s why [for] people like him this initiative is so important to thank them.”
Brian and Charlie both work in the healthcare field. Charlie is pursuing a Masters in Healthcare Administration and Policy while working for a hospital system in Boston as the practice manager for five doctors’ clinics. Brian is a health information technology expert at Massachusetts Eye and Ear Infirmary working as a project manager and consultant, helping to implement the Epic software electronic health record system.
Now that you’ve been living with MS for awhile, where do you seek support?
“One great way to seek support is to go to AboveMS—it’s an amazing educational resource for the MS community. Reaching out to your local MS chapter is great too. But #MySupportHero, Charlie, is the one who actually does all the research for me and he’s found great resources on AboveMS.com for me as well.”
Who inspires you to live better with MS?
“I’m very involved in my community. I do the MS Climb to the Top in Boston every year and I’ve been doing that for the past seven years. When I see people living with MS…who are more progressive than me, they inspire me because I want to do what I can for them [by raising awareness and funds for MS research].”
For this year’s MS Climb to the Top, more than 700 climbers raised $350,000 by racing up the 1220 steps of The Hancock building, a 60-story skyscraper in Boston that is the tallest building in New England. Brian reports that he made the 61-floor climb in about 14 minutes, averaging 85.34 stairs/minute!!
What advice would you give to friends, loved ones, or other MS patients who want to know how they can best support someone living with MS?
Rachael Stacom, an MS nurse practitioner in New York, responds, “I always think communication is key and really talking about what’s going on, what you are both feeling. Going together to the appointments [is good] so that you can support one another and remember for each other about what advice is [being given]. But really talk about what’s going on [with your doctor or nurse] because as healthcare professionals we’re here to support you, and we want to help so let us know what’s going on.”
Why is it important to express appreciation to those who care for you, provide support, or inspire the MS community?
Just as Brian sent me that email many years ago and as much as he lets Charlie know how much his support means to him, I believe that it’s very important that we let others know how much we appreciate the big and little things that they do to support us in our fight against MS.
Even just saying thank you to the people who touch our lives can mean a lot. As Brian says, “that’s a great way to pay it forward.”
Thank you #MySupportHero for giving us an easy way to do just that. Send your #MySupportHero a virtual orange flower (orange signifies MS awareness) and thank them publicly on Twitter, Facebook, Instagram or Pinterest by using the hashtag #MySupportHero. Go to AboveMS.com for more information about MS and learn more about the #MySupportHero campaign.
Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.