Living with episodic ataxia

When we last wrote about Jade, now 15, she was eight and loved playing the recorder, horse riding, dance and canoeing.  Having been diagnosed as a toddler with episodic ataxia, which affects people in bouts or attacks of unsteadiness lasting hours or days, her Mum Ceri says she has gradually learnt to adapt to living with ataxia.

“Some days are good but other days she can`t get off the sofa due to her balance. Her voice is more slurred now than when she was younger which Jade is not happy with. She is also now registered as severely visually impaired and has a white cane to help her as she is blind when she looks down.”

Jade still plays the recorder at school, but she’s had to give up horse riding due to the weakness in her core muscles and her eyesight made canoeing impossible, but she has a new-found love for singing and drama and attends a visually impaired drama group.

The unpredictability of episodic ataxia can be very frustrating for Jade, who loves being outside and when she is well, is as active as she can be.

“On good days, Jade has one speed and that is flat out!  But she does tire very quickly and sometimes will need to recharge in the day with a short sleep.  On days when she is ataxic, her mobility is greatly reduced and her vision becomes worse and she can feel nauseous and dizzy. She also has hyper mobility and wears leg braces eight hours a day to support the muscles in her feet and lower legs.”

Jade has struggled all the way through her school life and has only had some one-to-one support in the classroom in the last year, but hopes to have more in the future.  She finds it difficult with children in school due to lack of understanding with her conditions, but she does attend clubs in our area after school, and she is a young leader at church, so her closest friends are outside school.

The pandemic has of course had a huge impact on everyone, not least those with challenges like living with ataxia.

“The first lockdown wasn’t too bad, with the better weather we did a lot of gardening and decorating the back garden and had our meals outside most days, which Jade loves.  But the winter lockdown has been horrendous as Jade has been so restricted and not able to get out and do the things she loves on days when her ataxia isn’t so severe.  Not being able to go to school has impacted her mental health – she doesn’t cope well with remote learning at all.  Trips to the supermarket became too difficult, as with her restricted vision she has to rely on other people to see she has a white cane and to socially distance from her, but sadly some people haven’t been very kind.”

From the initial diagnosis, Ataxia UK have been there for Jade and Ceri, who has also been diagnosed with episodic ataxia.

“Ataxia UK have supported us completely over the years. They’ve helped us with supporting letters when necessary and Sheila on the helpline has spent hours just listening to me babble and is so supportive. I will forever be grateful to Ataxia UK.

Ceri and another lady with ataxia, set up an Ataxia Support Group in South Wales, shortly before the pandemic, with monthly meetings hoping to resume once it is safe to do so, as well as trips out.

“When we get together, we find we don’t always talk about ataxia, we are having such great fun and understand each other without having to mention it.  I can’t recommend joining a group enough and would say to anyone in our position that there is support out there, don’t be shy to look for it.”

Your support is helping families like Jade’s to find the advice and friendship they need to live with their ataxia, even more so during the extra challenging times we are in, so thank you for continuing to be there for them.