Olivopontocerebellar Atrophy

Here are links to two videos I made that talk about my rare disease. The first was made a year ago and the update was made last night. Just trying to educate and let you know that you are not alone!
#OlivopontocerebellarAtrophy

youtu.be/_zW8h3PLpao

youtu.be/0Y-pq_I4dkM

My disease causes me to have severe balance issues. I seriously fall everyday and fall into things multiple times a day. I can’t remember a time when I didn’t have at least one big ugly bruise somewhere on my body. Right now, I’m dealing with the aftermath of a fall yesterday when it feels like I did something to a tendon around my ankle so I’m laid up in bed. It’s hard not to feel down. I feel so lazy being in bed or on the couch all of the time but it’s the safest place for me. Can anyone relate? I cried as I read this back before posting. Am I being a baby? I know there are worse things.

Hi,

My name is Christie Alexander. I am a National Board Certified Teacher with 20 years of experience in the classroom. The majority of my career was spent as a kindergarten teacher. In 2013, I started noticing a change in my balance so I went to my regular doctor. He was baffled so told me to do yoga for a year and see if that helped it.

After a year of yoga, my balance didn’t improve and my handwriting worsened. My students couldn’t understand why the marker would shake as I was trying to write for them. I went back to the doctor and this time was sent to a neurologist who gave my the diagnosis of olivopontocerebellaratrophy or OPCA for short.

This RareDisease is progressive and has no cure. I now must walk with a cane, I have terrible hand tremors and it has greatly affected by speech. You can watch a short video I put on YouTube https://www.youtube.com/watch?v=_zW8h3PLpao&t=140s that describes how I am living with OPCA.

Because of my progression, I couldn’t work like I used to but did not want to stop so I now teach pre-k and love it. I have another adult in the room to help with the students, to assist me if I ever fall in the room and help me write whatever is needed.

I wanted to share my story because like many of you, I went through depression and was diagnosed with severe Anxiety. I was “mourning” the things my body could no longer do. After many months of therapy and medication, I began to wonder “why me.” I decided to stop focusing on the negative and strive to use my diagnosis to help others.

I created and run a monthly support group for people with all forms of rare diseases and caregivers (they need support, too). I also try to use my online presence to advocate for rare diseases and to diminish the stigma of depression and Anxiety. I am always happy to talk with anyone who may need it. #RareDisease #Anxiety #olivopontocerebellaratrophy