Dan and I knew something epic was brewing when a big white moving-van-type truck pulled up to our house around 7:45 a.m.
A man got out of the truck and walked toward our house. Dan greeted him at the garage door.
“Are the home owner?” he asked Dan, who confirmed his role with a quick shake of his head.
“Where’s your breaker box?” the man continued. “I need to see if your home has enough to power our lights.”
OMG. This was getting real. And real big.
You see, I knew we were going to be involved with a campaign promoting the first-ever Progressive MS Day. And it’s not like Dan and I haven’t been involved with media opportunities to share our stories of living with Multiple Sclerosis.
But this was different. It was exciting, overwhelming, intense, and – let’s be honest – a little scary all at the same time. I mean, it’s not every day you have a California-based crew of 14 video professionals show up and take over your house for two solid days because they want to tell your story.
My story?
Yes, they wanted to tell my story of living with progressive MS. There are great behind-the-scenes accounts from those two memorable days, but I think it’s best to let the video speak for itself.
Why recognize this day?
The nation’s first-ever Progressive MS Day is happening on Wednesday, March 28, 2018. In partnership with the MS community and governments across the country, Progressive MS Day shows support, offers education, and calls for more research to advance care and reduce disability for those living with the most debilitating forms of the disease.
While Dan has relapsing-remitting MS, I’ve lived with a progressive form of MS for the past 15 years.
Progressive forms of Multiple Sclerosis are characterized by a sustained build-up of symptoms with an insidious increase in disability.They remain frustratingly difficult to treat, due to a history of unsuccessful clinical trials and limited understanding of why progression occurs.
That’s why this day is important to me. Finally, my form of the disease is getting its deserved attention!
I am grateful that I had this opportunity to share my story and of course, my story wouldn’t be complete without Dan. And we aren’t the only people featured. Two other amazing people who are LIVING their best lives in spite of this disease are featured in this inaugural campaign.
So what can you do to help observe Progressive MS Day on March 28? Get social and join the conversation on Facebook, Twitter, Instagram and LinkedIn using the official hashtag: #ProgressiveMSDay.
You’re encouraged to highlight resources, programs and services for people living with progressive forms of MS, as well as share your stories of perseverance and hope.
And my hope is that by next year, Progressive MS Day will celebrate new discoveries for addressing and treating progressive forms of the disease.
To hear more about our perspectives on #ProgressiveMSDay:
- Listen to our current radio show A Couple Takes on MS
- Catch our podcast interview with host Jon Strum on RealTalk MS
- Hear the story about us and Progressive MS Day from Ben Thrope on WCMU Public Radio
Jen, you did an awesome job on the video. I am surprised Dan didn’t try to photo-bomb at some point.
What a tremendous spokesperson for Progressive MS Day. Well done.
Thanks, Doug! It was an incredible experience, and we hope #ProgressiveMSDay makes a difference in the MS community. And I think I did photo-bomb once, but we’ll have to wait until they release the behind-the-scenes bonus features 🙂
Great job. Really thrilled to finally see progressive MS getting some attention.
Bravo.
Thanks for connecting with us, Ardra! It is exciting that progressive MS is the focus of a campaign and that people are recognizing that while it can be challenging, life still can be very rewarding 🙂