Living with OPCA
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!
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.
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