OMS- 15 MONTHS

My diagnosis of OMS seems years ago.  In fact, the diagnosis date was June 25, 2010.  Every now and again, I compare what I was doing this time last year.  This time last year I was walking alone but could not run.  Joe let me drive myself to my Physicial Therapy appointment for the first time.  The IVIG/Steroid treatments were being reduced to every other week and I was still on Keppra 1500 mg. twice daily.

Fast forward, 15 months later.  I have been working full time since mid-January 2011.  I have been off all of my medicines since mid-May.  My running stride is back to normal, which means steady but not fast.  My hand strength, which I have not mentioned so much before, but have heard other OMA friends talk about, is back to normal.  Also, my ability to move my head back and forth and have my eyes comfortably scan while reading, driving or watching the grandchildren in sporting events is almost normal. 

What is left as far as symptoms?  I still notice small amount of tremor feeling mostly in the morning.  I still will visibly tremble if I am in front of a group speaking.  My head tremor when nervous rarely appears but mostly it was noticeable to only me.  I can multi task better.  Focusing on a conversation for a long period is still a bit difficult.  There is still some difficulty in short term memory but could also be a bit of age.  My stamina has definitely improved.  The skin sensitivity reappears if I am extremely fatigued. The several months prior to my illness seems lost to me.  I try to remember details of family gatherings or work projects but that entire winter and spring of 2010 is mostly lost.  As I look at pictures of me over the last year, the realization that I was sick is very real.  There is not animation to my face.  Even since January when I had my photo taken for my work ID, I look different.  My face was still a little swollen then due to the steroids and my eyes kind of droopy and I think that was from the Keppra. 

When I think back where I came from since the diagnosis of Opsoclonus Myoclonus Ataxia Syndrome, I am truly amazed.  No one could have made me believe or probably even my family and friends that I would be functioning at this level.  I was even filling out my disability papers with Social Security office this time last year and now I continue to contribute to that fund.  YIPPEE!!! I think????

For those of you newly diagnosed with OMS or continue to battle with smyptoms and the family and friends that support you, stay strong!  Improvements happen in very small increments.  I encourage you to continue to exercise your body and mind.  Celebrate your improvements no matter how small.  Thank God that you are here as an inspiration to others and thank those that continue to have faith in you and love you.

GOD'S GOT THIS!

Love,
Kim