Many of you are participating in MS Walks across North America. We’re grateful that you’re getting the word out on Neuromyelitis Optica (NMO). Courtney built an impressive team in her home town of St. Augustine, FL so we wanted to get her impression of the day.
Tell us about yourself.
I am a Navy vet and I separated in January of 2006, moving from Hawaii back to my home town of St. Augustine, FL. A year later I married my Navy sweetheart.
In September of 2009 I started experiencing weird sunburn feeling in my legs and arms and it was very sore to the touch. I didn’t think much of it. My husband and I went to visit my in laws in Pennsylvania and I began experiencing very bad headaches, then on the drive back home I was unable to urinate. I went to the ER when I got home and received a catheter and due to the fact of the tingling and sunburn feeling, I was seen by the Neuro team. I was placed in ICU for about 4 days then eventually diagnosed with Transverse Myelitis. About a month went by and I was somewhat ok, only having headaches so went to my primary care physician and was given a pain killer. Few days later I was shopping for Christmas and next think I know I awoke to EMTs. I was rushed to the hospital as I passed out while in the store. The hospital kept me overnight and released me. Then a bit later I was very nauseous, throwing up and had unbearable headaches. I was so tired all the time. My husband took me back to ER where the hospital said I had meningitis. I stayed in that hospital for about 11 days and was released. Not too much longer after that my left eye started to act up, almost as if a curtain was being drawn over it and it began getting blurry gray and eventually went completely black. I had an appointment set up with Jacksonville Mayo Clinic but it was still months away. I called Mayo and the neurologist told me to get the ER ASAP! I brought all my hospital records, notes, MRI’s etc. After being reviewed by the Mayo ER I was admitted. Next day the team of Dr’s including the Neuro chief came in with their diagnosis of NMO. I was relieved yet scared at the same time. I still to this day do not carry the antibody for NMO.
I live as normal of a life as possible. I have been married almost 6 years, no kids yet (I’ll get advice from little Ms. Erin Miller) but hopefully that will happen soon. I work 40hrs a week at the most wonderful caring place as an Insurance Agent. I walk unattended which I am happy about, and spend lots of time with my nieces and nephews. I love my life even with the disease. I guess I believe everything happens for a reason…taking the bad and making the most out of it. I am a very positive happy person and most would not think I have anything wrong with me. I am thankful for all of those in my life.
What motivated you to do the MS Walk and build a team?
I wanted to do the local MS walk as it was my time to share with others about this disease. Most people have not heard of NMO so I wanted to spread the word. I think if I can help raise money for MS and a cure can be found, then that is one step closer for a cure for NMO!!
The NMO community was really impressed with the size of your team. How did you convince so many people to join you?
I was born and raised in my little town St. Augustine, FL as was my mother and family so we are very familiar with the community and businesses. Most of those who couldn’t walk donated, such as the businesses that sponsored my shirts. The walkers were made up of my friends, friends of friends, coworkers and my family. It was truly an amazing turnout and I couldn’t have been happier! I did have a fellow NMO walker/wheeler Mia Stout Byard that made the 2 hour drive up with her daughter and her friend to attend my walk even though there was a walk the same day in Gainesville where she was from.
Tell us the details of the walk.
The walk started at the First United Methodist church downtown. The weather ( for Florida) was dreadful…it had been such a rainy weekend but lucky for us it slacked up for the walk and it was just chilly. I didn’t mind as I’m on steroids so the cold is good for me. The shirts I designed online and had a friend of ours put it in the format to have them printed. We had a table and tent set up with Guthy Jackson brochures, I had rubber awareness bracelets made to hand out and my friend had awareness cozies made. The company that does our work shirts gave us a fabulous deal and I was able to purchase shirts for my entire team consisting of 63 people and them some!
You’ve inspired other patients to act as a Patient Advocate. What advice would you give anyone wanting to get more involved?
I became an advocate by chance. I really am not one that likes to be the center of attention at all but I do like any community involvement. I have a wonderful group of family and friends that would do anything for me and they came through as usual for this walk. I highly recommend anyone wanting to get involved to get a nice group together so they can help out. Before you know it, you become very overwhelmed!
Do you plan to make this a yearly event? If yes, what would you do differently?
I have spoken to my family and friends and they would like to try and get a NMO walk on our own. I know its hard work, but again I know so many folks we can make it happen. If not I would definitely have another team for next year.
What surprised you the most about the day?
I was surprised the most at the people that actually signed up and actually showed up. A lot of times you receive what you think will be a massive team then no one shows…so I was ecstatic for the turn out and felt like a celebrity. The North Florida MS chapter could not believe the size of the team. It Made me very proud.
Is there anything we missed that you want to share?
I just want everyone to know that just because you have this rare disease do not let it slow your life down. Take things as they come as I do. I live life as normal as I can and surround myself with wonderful people that make my life that much better. I have an awesome husband that through all of this has stuck by my side. I think to myself that I am lucky as things could be worse. Again take it day by day and keep that positive attitude. It’s amazing how much better you will feel. If folks ask about your awareness bracelet or about the disease don’t be afraid to share. I am very open about my disease and what I go through on a daily basis. A lot of people take steroids for a small cold and often I hear them say they have new found respect for what I go through. That makes me laugh.