There’s been some great responses to this blog out there, but I think this has to be my favorite. A parent was inspired to start their own nystagmus blog from a caregiver’s perspective. It’s called simply, Nystagmus Blog.
How awesome is that?!
I get a lot of feedback and questions from parents, and I know there is a lot of fear out there. Honestly, I think a nystagmus diagnosis is more traumatic for the parents than it is for the child. From a child’s perspective, they won’t really know what it’s like not to have nystagmus, so they are surprisingly resilient. For parents, on the other hand, it’s difficult because they can never truly understand what their child is going through. It can be a frustrating journey.
I encourage all the parents out there to check out this blog. It’s always good to have a community of people who know what you are going through. It’s also got some great advice and general info for parents.
Best of luck!
Hi Jo –
I was well into my 20’s before I understood I had a “disability” and was “limited”. I still don’t see it that way – I adapted, found my null spot, was able to drive and function pretty darn well. I suck at things like hitting a baseball due to the movement of my eyes, but what-ever. My challenge has been my parents never really understood what the problem was and no one ever explained it to them – or me – for many, many long years. Happy to see open communication on all this, finally.
Hi Jo, Sorry not sure if this is the right place to post or not but I thought I would say hello anyway! My name is Monique and I live in Australia. I dont have nystagmus and I’m not a parent, but I am the best friend of someone who does have ‘shifty eyes’. My friends name is Karley, 16 months ago she was struck down with a mystery illness that led to her needing brain surgery to biopsy her brainstem. Karley was diagnosed with Brainstem Vasculitis. Following the surgery Karley was left with See Saw Nystagmus. This has impacted her life dramatically due to her being ‘dizzy’ at all times. Following the surgery Karley was unable to walk, so for the past 16months she has taught herself to walk despite the constant dizzyness. Its amazing how the body adapts to change and a persons will power takes over (Karely completed the City 2 surf, a 14km walk in August this year). Karley has been left with multiple deficits but she is working towards getting her life back. We are in the process of researching See Saw nystagmus (which appears to be rare) and are also travelling to Florida in November for more rehabilitation for her deficits. Has anyone else on your blog heard of see saw nystagmus??
Jo your blog is the first place I have seen such honesty and humour. You are an inspiration!