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Nancy Kochevar

I am 69.

I became aware that something was wrong in 2016 when I lived in Southern California.   I started with my physician, went to an ENT had CT scans, and eventually went to UCLA. I had this strange feeling in my sinuses.   

From there, I noticed that my speech became very strange, and people asked if I had a cold.  My husband and I moved to Colorado in 2017 and I began to see an ENT in Boulder, Colorado.  He diagnosed me with Palatal Myoclonus.  He started botox in my throat and sent me to see a neurologist.  I had an MRI and everything was normal.

I continued to suspect something was really wrong with me.  I am an avid hiker and I found myself becoming very cautious.  Around this time, I started to have double vision.  I found my self reading with one eye.   My optometrist said it was something older people get.  So, I got prism glasses.  At this time, in 2018, botox was no longer working.

In 2019, I sent letters to various clinics.  After several rejections from Mayo Clinic, I did write to an individual doctor who agreed to see me.  A drive from CO to Rochester is not fun!

He diagnosed me with hypertrophic olivary degeneration.  It appears the MRI did show a problem.  I went back to Colorado and started to see neurologists from UC Health Movement Disorder Clinic.  This doctor feels strongly that I have a slow ataxia with Palatal Myoclonus.

Both physicians were not able to predict my future or what my future would look like.  I cried for months.  I joined the Denver Ataxia Group and NAF.  It is still a bit frightening. Looking back, I see that there were earlier messages.  Looking at birds through a binocular was not easy.  I started to trip sometimes on a hike.  My handwriting became horrible however I can still print.  

As soon as I was diagnosed, I thought my world was coming to an end.  I could not sleep.  My life changed.  I gave away most of my clothes.  I did not see a light.  I volunteered for years and can no longer do it.  Thankfully, I can still use my computer.  My genetic screen is normal and I continue with botox and a speech therapist.  

This is why research is so important.  There is no treatment, cure, drug that can help.  There are no options.  This really destroys who we are.  

About Nancy: When I retired from my last position in Corporate Quality at a biopharmaceutical company, I volunteered at a food bank, homework center for students, hospice and an Institutional Review Board that reviews all clinical research that a community participates in. I love to hike, snowshoe, read, and bike.

 

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