The Fight To Be Heard
Ataxia is a Greek word for “Lack of Order”. Our mission is to bring some order with Ataxia awareness.
As part of the Ataxia Aware project, we are sharing personal accounts of those with Ataxia or other rare conditions. We want to provide a safe space for people to talk about their experience with disability, whether themselves or someone close to them.
The beginning of my story:
Most of us are aware of how incredibly difficult it can be to get a diagnosis relating to a Neurological condition. It can also be incredibly difficult to get a diagnosis overturned.
Currently, I know I have a link with the mutant gene SYNE1, which in turn is linked to Recessive Episodic Ataxia. It’s worth mentioning here that some Episodic Ataxias are linked to Epilepsy.
Leading up to 1991, I experienced episodes of Deja Vu. At the time, I didn’t know exactly what these were, and my GP wasn’t really interested. Around the same time, I experienced weird balance issues, particularly when bending, leaning my head back, and turning quickly.
All this came to a head when I had a seizure in my sleep. I woke up in the hospital, and my husband thought I’d had a stroke.
Tests failed to trigger a further seizure, but because of my history of Deja Vu, and taking into account the sleep seizure, I was formally diagnosed with Temporal Lobe Epilepsy in 1992, and obliged to take medication to continue driving.
I knew it wasn’t just epilepsy:
As other weird symptoms, including eye problems, crept in, I couldn’t believe they were simply all linked to Epilepsy. It’s been an uphill, demoralising journey to get this diagnosis overturned, but ‘something’ was telling me not to give up.
The symptoms I experienced just didn’t make sense. Double vision, Nystagmus, severe brain fog, stress when multitasking, and I could be totally overwhelmed by fatigue. My GP failed to associate these with anything other than Epilepsy, and I’d been discharged from the hospital by the neurologist.
The fight to be heard by doctors:
I saw an ENT Specialist privately; he dismissed me as being ‘hysterical’ when he had to abort tests, although he still sent a bill. But the NHS eventually tested and confirmed I suffered from BPPV (Benign Paroxysmal Posterior Vertigo).
The real turning point came when I started to experience unexplained falls, and my GP was forced to take some action. After a Tilt Table Test, I couldn’t stand unaided and fell about laughing, feeling really euphoric, but obviously I wasn’t drunk. An MRI showed some Cerebellar Atrophy.
My eye problems started sometime after I started Epilepsy medication, although at the time, my concerns were dismissed by the Neurologist. But I went on to have a serious eye condition, which left me with double vision, and I was also noticing Nystagmus. This led to years of treatment, but fortunately, I was eventually referred to a brilliant Consultant Ophthalmologist who finally banished the double vision with Strabismus Surgery. Although Nystagmus can still creep in if I glance in a certain direction.
Where I am now:
I count myself extremely lucky to have arrived where I am now. Ataxia symptoms are with me 24/7; they can be worsened by ‘triggers’, but experience has taught me how to deal with this, and currently, I don’t take any medication.
I’m still engaged in pursuing a definite diagnosis.
Written by: Beryl Park
Edited by: Meg Elmer
We would like to thank Beryl for sharing her inspirational story with us. If you would also like to get involved and share your experience with Ataxia or another rare condition, please get in contact with us through our social media channels or our email.