Marina Parker

Oh boy, where do I start? At the beginning I guess…following neck surgery I developed a 4cm abscess on my left prefrontal cortex. I had no symptoms of this abscess until it ruptured. I thought someone shot me in the head. Things get very hazy after this…I remember light hurting my eyes and my head hurt so bad so I went to my bedroom, closed the curtains and that’s all I remember. My husband said when I woke he forced me to wake up the next morning my right eye was drooping.

He took me to the ER where they did a CT scan WITHOUT contrast, gave me 20 Vicodin and sent me home. I took all 20 in 24 hours. Still very concerned he took me to a walk in clinic who referred me to an ophthalmologist who then said I needed to see a neurologist. This is day 6. Because we were getting ready to move back to AZ so I could finish my last semester at ASU we went into my surgeons office to get my records. He took one look at me and said “WTF?!?” He fast tracked me to the ER. I was put in the med/surg ward with a roomate.

A neurologist came in to do an LP and when I saw that my CSF was brownish orange I knew this was BAD. Very quickly after that a hazmat team came in, gave my roommate shots and transferred to ICU Isolation for 10 days. Upon discharge they put a pic line in which I had for 2 months. The next 8 years were a nightmare of doctors telling me there was nothing wrong with me, it was “all in my head”…they were correct as that is where my brain is. Finally I found a neurologist who actually did a neurological exam, a neuropsych evaluation and diagnosed me with Acquired Ataxia. I was so happy to have a diagnosis but when I asked what next he said “There’s nothing we can do.” Ouch. That’ was 7 years ago and I still have to explain to people that I am not drunk or high but have a brain injury, it’s exhausting. Well, that’s my story.

When Were You Diagnosed? Which Type (If Known)?

2018.

How Has Ataxia Impacted Your Life?

I don’t have words to describe how this has messed my life up, destroyed my dreams, damaged relationships.

What is One Thing You’d Like the People to Know About Ataxia?

It’s an “invisible disease” and because of that we are often judged.

Share Your Advice – How Can Others Support Someone with Ataxia?

Don’t stress them out, it makes it so much worse, be kind and understanding that your loved one did not ask for this disease and did nothing to cause it.

Disclaimer: The views and opinions expressed in this story are those of the individual member and do not necessarily reflect the views of the National Ataxia Foundation (NAF). Any medical information shared in this story is based on personal experience and has not been reviewed or endorsed by NAF or a medical professional. Always consult with your own physician or qualified healthcare provider before making any changes to your care or treatment plan.

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