Rachel Dykoski, diagnosed in 2004
What are your memories from the day you were first diagnosed?
As an African American and a recent mother when my first relapse presented itself, it took a couple of years to have it confirmed by a neurologist. I stress the word confirmed because there were many "possibilities" to be explored prior to the confirmation. So I felt relief.
What have you learned from living with MS?
The joy of living, loving and striving to be my best. I was so focused on having stuff, fitting into cliques and attaining status that I was lost. Who says thank goodness to being diagnosed? I DO! MS gave me my life back. And it was all done with the loving support of my family and with the caring education and help from the MS Society. The Minnesota Chapter raised my awareness about the disease and offered classes helping me learn about the human side of living with MS.
What advice to you have for someone newly diagnosed?
You gotta move it or lose it. Try not to lose yourself in the process of figuring out the disease. Live in the moment, cheer yourself on and learn how to ask for and accept assistance from others. We are all nimble, ever-changing creatures and life may not be exactly as we planned it. But from where I sit, it can be fabulous nonetheless!
What are you doing to move us closer to a world free of MS?
I have been an advocate and volunteer for the society since 2005. I'm fortunate to be a steering committee member with the MS Technology Collaborative. The National MS Society, Bayer and Microsoft created myMSmyway.com with the direct help from persons living with MS. Folks from across the US of all ages and at varying stages of living with MS provided feedback and shared information on how they use technology to live with MS. I also joined the Minneapolis Advisory Committee for Persons with Disabilities and the Alliance for Metropolitan Stability.
And of course, being a citizen lobbyist. I love writing congress and calling representatives about Minnesota Chapter Action Alerts.
What do you enjoy most about participating in the MS movement?
The joy of sharing information and being an example of a person living with the disease. I love volunteering at the MS Society booth at the Minnesota State Fair! Know-it-alls like me gain energy and happiness by helping people.
How does it change your perspective on having MS?
It keeps me positive, living in the moment and oh-so-very real. Pity parties don't last long. The friends I've made through the society have opened many doors and expanded my perception of myself. I'm free to be whoever I dream I can be.