Why did you decide to participate in Walk MS?
I was diagnosed with MS a little more than two years ago.
What’s your favorite thing about Walk MS?
My favorite thing about Walk MS is that it allows me to feel like I am actually doing something. There is so much about this disease that we can't predict or control; it's nice to feel a sense of purpose. It also puts so many great human qualities on display; love, teamwork, empathy and joy. It's kind of like magic.
How many years have you participated in the event?
Last year was my first year participating in Walk MS. It was actually my little sister Kim's idea. Initially, it was just going to be something for us to do together along with my older sister Leah. I decided to invite people to join us on Facebook, and the response that we received was unbelievable. We ended up with about 70 people walking with us and raised almost $12,000!
What are a few things you wish people understood about multiple sclerosis?
Some of the things that I wish people understood about MS is that it is different for each and every person. One person's symptoms and disease progression can be totally different from another person's, even if there are other common factors. Also, what works for one person, may not work for another. I get a lot of people telling me things like: "I read this article about a guy who ate nothing but spinach and quail eggs, and he never had another symptom!" Although I truly appreciate the fact that people care enough to take the time to listen to, and pass along information, it can be a bit overwhelming.
I also wish that people understood the impact that they can really make. I don't think people really believe that their time and donation can make that much of a difference.
What’s the most important, meaningful or memorable connection you have made since being diagnosed with MS or having someone close to you diagnosed?
I think that one of the most important connections that I have made since being diagnosed is one that I made just recently while at the annual Sylvies awards in Minnesota. I met one of the speakers, Ronda Giangreco. She wrote "The Gathering Table," which I was drawn to, because cooking is one of my forms of therapy. In reading her book, I found so many parallels in our lives, and it came to me at a time when I really needed it, which brings me to one of the reasons I will be a fabulous Walk MS Ambassador!
Also, I just returned home, a few days ago, from a six-day hospital stay due to a bad flare up. It was the worst one I have had, and upon arriving at the hospital, I was unable to walk. I am in the process of gaining strength back, and it gives me a ton of motivation to get the word out and do whatever I can to help the cause. A week in the hospital with snoring roommates and medicines that seem to cause just as many problems as they solve is enough to light a fire in anyone!
What makes your MS story unique?
I think all of our stories are unique, although there are common threads that tie us all together. I had horrible experience after horrible experience in every aspect of my initial healthcare regarding my diagnosis, which has given me some perspective on how much work needs to be done in education. I am lucky in that I have a ton of amazing people around me, who are so willing to go to bat for a cause that they knew very little about prior to me flooding Facebook pages with information. I hope that isn't unique; I hope that most people have similar support systems.