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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