My journey begins

Grammy

Grammy

Multiple Sclerosis has always been a part of my life.  I grew up close to my maternal grandmother, Grammy, who, by the time I was born, could only move her head.  Grammy diagnosed long before MRI technology existed, so she was given a blindfold task.  She was blindfolded and asked to feel various items.  As a mother of a 6 month old, a 2 year old (my mother) and a 6 year old she was unable to feel a diaper pin.  After her diagnosis she made a visit to a professor she knew who was living and teaching with MS.  His determination to continue to live a full life helped give her strength as she struggled with the disease.

I have fond memories of sitting beside her on her bed in the nursing home, stretching out her fingers that would involuntarily curl up.  She always looked glamorous to me, even in her hospital bed, with her nails always painted, her lipstick just right, and her cigarette holder.  Although she could no longer perform as the singer she used to be, she certainly looked the part to me.

When I wrote my first research paper in high school, I chose the topic of Multiple Sclerosis.  Something that was so familiar, and yet I knew so little how the disease had managed to cripple my grandmother's body.  I learned about the myelin sheath that coats our nerves and how the body's immune system can go haywire and begin attacking the nerves, causing damage and scarring.  I discovered that it was this scarring, or sclerosis, of the nerves that caused the paralysis, numbness, and pain that my grandmother experienced. I learned that it can also cause fatigue, cognitive dysfunction, vision loss, balance and coordination problems, bladder and bowel dysfunction, vertigo, and emotional changes.  I never imagined that I would experience some of these symptoms myself.

The girls who helped me through my first symptoms

An Unwelcome Arrival-October 2002

In the fall of 2002, my life couldn't have been better!  I had just returned from a semester abroad in New Zealand, I started dating this amazing guy, I was living with a great group of friends, and enjoying every minute of being a student at SUNY Geneseo.  Then it happened.  I woke up with numb feet.  I ignored this, thinking I must have slept funny.  But then the numbness spread.  By the time I went to the health center my entire body was numb, with the exception of my face, and I was unable to button my clothes, write, type, eat or brush my hair.  I was sent immediately to Strong Memorial Hospital in Rochester, NY, where the emergency room staff considered my worst fear (that it could be MS).  But because I had no history of these symptoms, the physician suggested that it may just be stress.  I was happy to accept that explanation (the idea of MS was just too scary).

For the next month, as my body slowly returned to normal, I was given amazing support from my friends and family.  The girls I lived with helped me dress, put on makeup, brush my hair, and tie my shoes.  Somehow that amazing guy, Steve, still wanted to be with me and he patiently helped me do the simple things I was unable to do for myself.  I remember him helping me tuck my hair behind my ears and cutting my food.  My term papers were deferred and I will never forget the marathon writing session that I spent with my mom that Thanksgiving.  We spent the entire vacation holed up in my cousin's bedroom, with me dictating and her typing all of my papers for that semester.

By Christmas I was fully functioning again, and while I was happy to move on and think that those symptoms were just a fluke, my parents wanted more answers.  It was off to see the neurologist and get my first MRI and a spinal tap.  When the results came back, I cried.  There was scarring on my brain, but only in one area.  I probably had MS, but they couldn't give me a diagnosis because there were not multiple scars.  I just had to wait to see if I would have more symptoms.