What a heart-warming and honest piece from our Friend, Glen. He wrote this article in support of Rare Disease Day 2025 campaign. Thank you, Glen, for sharing your story.
This journey started around 1999-2000, and it’s been a hell of a journey. I’ve lost then found myself, probably hundreds of times now.
It started off with my balance then just general coordination. I was around 19-20. My speech is quite slurred, I think it always was, but it has gotten worse over the years. After discussing it with family I went to the Dr in 2001 as we all thought this was no longer normal, couldn’t pass it off as just being a bit clumsy anymore! After a few tests which included an MRI scan of my brain my GP was able to tell me I had quite severe atrophy of the cerebellum and had been diagnosed with Cerebellar ataxia. I’d never heard of this, but she explained a bit about it, the bit I listened to most was how it could never get better.
I’ve been accused of being drunk so many times in the years since. People have seen me getting into my car then reported me to the police as a drunk driver, I must be the most breathalysed man in my town now! I also stopped going to bars a long time ago as the door staff always assumed I had drank too much and never even let me in. Ataxia can make you feel secluded and put you in a dark place if you let it, I’m ashamed to say I have let it – more than a few times.
I’m married now with 3 gorgeous kids. My youngest daughter was diagnosed with Cerebellar ataxia in 2020 at the age of 3. That’s my worst fear come true, it’s hereditary. She is one happy girl and chooses not to be sad about it, I wish I was more like her sometimes. She has definitely found new and better ways to overcome some things – she teaches me every day, without even realising it.
Watching her grow up is a privilege, it really is. It’s also hard watching her struggle, probably the hardest thing I’ll ever have to do. I did this to her, and it feels like my heart breaks a bit more every day. But the future may be bright, they are trailing some different medications that could maybe help her and others like her in the future. Until then I’ll keep learning, and she’ll keep teaching me.
