Your Blog

“There was no one to tell me how I should handle all this, no one who could point me in the right direction, no one to teach me how to manage my symptoms.”

“I don’t even feel like I had a childhood. I mean, I still grew older but it seemed the older I got, the worse I got. Symptoms. Hospital appointments. Diagnosis. More, and worse, symptoms. Hospital appointments.”

Jordan Jervis has spinocerebellar ataxia type 1. But this hasn’t stopped him pursuing his dream of becoming a clothing designer.

David Lowe was awarded the Jerry Farr Travel Fellowship in 2016 that allowed him and his wife, Glenys, to visit Australia.

Alan Maxwell tells us about his late wife, Jane, and her achievement in putting together her autobiography on living with ataxia, ‘Forever Yours.’

Deanna tells us about receiving her Friedreich’s ataxia diagnosis, humorously listing the pros and cons of having the condition, and how her attitude towards life has changed since.

The Exeter Campaign: Rachel Lyons, Lord Mayor of Exeter 2013-14, was instrumental in helping Ataxia UK and the Exeter Branch to fund an awareness campaign by choosing us as her charity of the year.

The Exeter Campaign: Beka is 15 years old, and has Friedreich’s ataxia. She was once an award-winning horse rider, but can no longer ride. This is her story.

The Exeter Campaign: Meet Bex, the face of the Exeter campaign. Bex has long been involved with the Ataxia UK support network, starting her own Branch of the charity in Exeter eleven years ago.

The Exeter Campaign: Phil has episodic ataxia, which can attack at any time without warning. The unpredictability of his condition has limited what he’s able to do for work as well as pleasure.

Hi Adam,
Thanks for your help with this! I would like to feature the following content in a ‘read more’ expandable block beneath the existing text on this listing page: https://www.ataxia.org.uk/Blogs/our-friends-blog/Category/members-blog
Many thanks indeed!
All the best,
Steph

Nigel Davis was diagnosed with idiopathic spino-cerebellar ataxia (SCA with an unknown cause) at 17. He was able to manage his condition for some time, but after teaching for 19 years, he was forced to retire.

Will Martin is 27 and was diagnosed with Friedreich’s ataxia whilst at secondary school. Will talks to us about how ataxia has isolated him from his peers, made him deflect from education and shares his crowdfunding goals for a new wheelchair.

Tallulah is 19 and has Ataxia with Oculomotor Apraxia Type 2 (AOA2), one of the rarest forms of ataxia. It took a full decade to receive a diagnosis, and she’s already fundraising for ataxia research.

Laura Bishop is 25 and was diagnosed with Friedreich’s ataxia ten years ago. Having dealt with the difficulty of facing the condition as a teenager and the trauma of two serious operations, Laura has come to terms with her ataxia, but is still fearful about what the future will hold…

Richard Brown was diagnosed with Friedreich’s ataxia at 14. It had a devastating impact on what things he thought he could do in life. Here, Richard takes us through his thought process in becoming a parent with ataxia.

Nicola writes about her son Jordan, who has Friedreich’s ataxia, and her experiences as a parent of a child with the condition.

Frances was diagnosed with spino-cerebellar ataxia type 3 (SCA3) in 2009 at 49. Her symptoms were worsening, but she didn’t want to believe anything was wrong. Frances tells us about acceptance, the changes she has had to make for her career and how she manages her symptoms.

Austin Fredericks was diagnosed with SCA in 2011. He’s a qualified electrician, has faced prejudice by people who assume he isn’t fit to work, and has even been taken to court for ‘drunk driving’ whilst sober.

Michelle Brown tells us about the many races she ran in very quick succession this autumn, in support of her father and fundraising for Ataxia UK.

Toyah Wordsworth discusses how volunteering and employment gave her the confidence to create her own business, and a board game to help younger people become further educated about disability.

Arran Eleanor Rigney started a company after learning of her ataxia diagnosis. She aims to help smaller businesses get noticed through her marketing skills, as well as employing her artistic talents to sell her exclusive range of Christmas cards to raise money for Ataxia UK.

A list of personal blogs, articles and thoughts that our Friends would like to share with the ataxia community.

Lisa Murphy, author of Theo’s Diary: The Observations of an Indulged Cat, tells us how writing has had a positive impact on her mental health.

It took almost ten years for Geoff Brown to receive his diagnosis; in that time he has become a wheelchair user and almost entirely lost his sight. Nevertheless, Geoff is still intending to follow his dreams.

Richard Brown talks about crowdfunding for his own trike, taking his needs into his own hands.

A unique group of co-authors who have two things in common: the ability to write historical, heartfelt horror, and the desire to fundraise towards finding a cure for FA.

Toyah Wordsworth discusses how volunteering and employment gave her the confidence to create her own business, and a board game to help younger people become further educated about disability.

To kick off our Friend’s blog is our regular contributor to the Ataxia Magazine, Matthew Law. Matthew writes a series on advice and adaptations, and here is one of his first articles for what was then The Ataxian in 2013.

Continuing Matthew Law’s series on Adapting to Life advice series, here is his article from the 2013 Summer issue of the Ataxia Magazine.