The Spirit of Louisville
This sounds like the name of a vintage aircraft or even perhaps a drum and bugle corps, but it’s what I see thriving in the multiple sclerosis community in that fine Kentucky town. I had the good fortune to travel to Louisville to be a part of the annual Norton Neuroscience Institute’s Making Connections Neuroscience Expo. This was a large gathering of people living with a variety of neurological disorders, along with speakers and exhibitors. All told, there were over 1,000 people present for this event. I was there to talk about iConquerMS™ as well as staff a booth in the exhibit area with more information about this patient led Multiple Sclerosis initiative. My talk was well received, or at least people appeared to be listening and there were even a few people nodding in agreement with my comments.
Although I was there to talk about iConquerMS™ and to encourage people to sign up and share their health data (Have You Signed up Yet?), I got so much more than just names and email addresses. I met a wonderful assortment of people who live in that region, and each has a unique perspective on their own life with MS. There were the people who cruised by, shared their contact information and then moved on to the next display. But there were even more people who wanted to stop, really learn more and they also took the time to share a bit of themselves with me and two of my sisters, who were there to help.
We were all touched by the genuine nature of the people and how poignant the conversations often were. We had an in-depth discussion with a woman who right at the start of our chat declared when she deteriorates just a bit more she plans to move back home to Oregon, since that is the only state that has a death with dignity law. Her husband stood to the side of her wheelchair, quietly agreeing with her while she explained her stance on the right to die by her own choice. Just as quickly, she switched topics and we had an in-depth discussion about her childhood experiences of growing up on a farm in Oregon and how she moved to Louisville.
There were caregivers accompanying people with walkers or in wheelchairs, who talked with us about their special needs. There were other people who identified themselves as patient leaders in local support groups, and they enthusiastically took additional copies of the iConquerMS™ materials to share at their next meeting.
Most poignant to me was a young preteen girl, who was wheeled up to our table by her sister, and excitedly saw we had iPads. After I joked and told her no, were weren’t giving iPads away but using them to gather contact information, she immediately told me she felt connected to all of the MS things because she has NMO, Neuromyelitis Optica. She displayed all the enthusiasm any 12 year old does when talking about things that are important such as their favorite teen recording star – but her story was about her disease. She smiled broadly when I told her she is the first person with NMO that I have met in person.
If you don’t know about NMO, please go to the Guthy-Jackson Foundation website to learn more. This great organization shares “NMO stands for neuromyelitis optica, originally known as Devic’s Disease. NMO is currently an incurable but treatable autoimmune disorder. The body’s immune system attacks its own healthy cells, most commonly in the optic nerves and spinal cord…. until recently, NMO was thought to be a type of Multiple Sclerosis. However, recent discoveries indicate that NMO and MS are distinct diseases. Traditionally spinal cord lesions seen in NMO are longer than MS but this is not always the case.”
We talked for several minutes until she spotted her mom and excitedly called out for her to come see what we had to offer. Mom was accompanied by the dad, who was in his own electric wheelchair and has MS. Quite generously, the mother shared more of the details of the diagnosis and path so far with NMO for her daughter. I was humbled by her graciousness in talking about having both NMO and MS in her family home, and we closed our conversation by my asking if I could give her a hug. I wanted to hug her just a bit longer as I thanked her for all she does for her husband and daughter; it just felt like this very strong woman needs someone to lean on, if just for a moment.
Their story, and those of the other people I met in Louisville, were full of spirit, despite the obstacles they are facing, and they left an imprint on me that I hope translates into even more energy to continue advocating and encouraging everyone to help us through iConquerMS™ to find the answers to multiple sclerosis. Please join us today at iConquerMS™ to share your health data and research questions – one of us has the answers to unlock a cure.
Wishing you well,