Rochester: Marilyn Schreier - National Multiple Sclerosis Society

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Rochester: Marilyn Schreier

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Marilyn Schreier

Why did you decide to participate in Walk MS? 
In the fall of 2012, I thought about doing Walk MS 2013. I was going to start fundraising for it with my sister, who was diagnosed in 2009 with MS. Little did I know that my daughter, Anna, was planning to surprise me at Christmas with a trip home to walk by my side. She and my husband, Ron, planned out the details to have her fly to walk with us May 5 in Walk MS: Twin Cities.
 
What’s your favorite thing about Walk MS? 
I participated in both the Twin Cities and Phoenix walks last year; I love the community. It is a great chance to meet new people, learn of new medications and trials out there, and the support everyone has for one another. People are so friendly and open to sharing their stories, which you don't find in everyday life. You feel like you are alone at times and don't have others that understand what you are going through.
 
How many years have you participated in the event?
Last year, 2013, was my first year participating in the event, as I was diagnosed in the spring/summer of 2012.
 
What are a few things you wish people understood about multiple sclerosis?
It is not a death sentence. When I was diagnosed, it seemed like the world was ending, and I wasn't going to be around for the life experiences my children were about to encounter. I've since learned that it is what you make it. People live everyday with this disease and don't let it take over their lives, while others decide it isn't worth trying anymore. Telling me you are sorry won't help me get better. It is not fun having a disease that shows no hurt to those around me, but I can hurt so much on the inside. I need people who will show me empathy and support, not people who say: "I'm sorry, but at least you're still alive."
 
What’s the most important, meaningful or memorable connection you have made since being diagnosed with MS or having someone close to you diagnosed?
This is difficult to answer, as I feel my family has been able to understand that I am not able to do everything that I use to be able to do. I tire out more easily these days. So they pitch in and help out when they can. I have coworkers who offer to do more for me at work if I am having a bad day, whether it be vision issues or the leg pain that I had until recently. There are days that I have issues with the numbness in my toes, with a different feeling in my right ear or with my injections. But all of my issues can be dealt with, as I feel it could always be worse. Knowing I can count on family and friends to do things for me is a huge relief. I am a doer and liked to be in charge of events but just am unable to do so.
 
What makes you a great Walk MS Ambassador? 
My mother showed me that life isn't over just because you receive bad news at a doctor's office. From the time that I was a girl, my mother was diagnosed and treated for  bladder and colon cancer, cerebral aneurism, chronic obstructive pulmonary disease and a variety of other illnesses. Each time, the doctors told us to be prepared for the worst: that she wouldn't be able to survive this kind of treatment to her body. She proved them wrong and lived to talk about it. She would be hospitalized, put in a nursing home, brought home and go back to everyday living. She would never complain that something went wrong or God was not on her side. She was the strongest person I knew, and I believe this is how everyone should live their lives. MS is not something I was accepting of in the beginning, but never once did I let the disease take over my body. I will fight it off until the day I die. And I will not be dying because I have MS, I will be dying because I lived my life to fullest and God has decided it is my time to go.
 
What makes your MS story unique?
I was misdiagnosed in 2006, when I had my first episode. Doctors told me they thought it was multiple sclerosis but later said it was just "optic neuritis." In the spring of 2012, I had another optic neuritis episode, but this time it was in my left eye, and it was worse. I was unable to see colors and or read out of that eye. They started running tests and suggested that it could be an MS exacerbation, so they did an MRI and spinal tap test to confirm their diagnosis. I was informed this time that I have MS. My life stopped. My world ended. I was scared.
 
But then I started doing some research and learning more about the disease. My family started to get involved and help with small things. My kids would call to check in on me; my husband started helping out around the house more and my sisters and brothers helped me plan the family events that I usually took charge of.

It has been a roller coaster ride, but since the first episode in 2006, it has been well worth it. Bringing my family closer than ever to me, being able to enjoy the little things and becoming involved in the National MS Society has helped me realize that life is too short to give up! I am living life to the fullest and enjoying everything as much as I can!
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Marilyn Schreier

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