I often share my experiences of living with Ataxia. You know, the BIG things like using a wheelchair for the first time, going to University, or choosing to become a parent. I don’t have the answers, but people find my experiences useful in their own lives. I have collected those posts together.
My ‘Meet the Community’ Interview for FARA
I have been getting to know people with FA around the world, I realised that I had experience of many of the things they have yet to face. I gave my answers to…
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Not Goodbye, See You Later: Eight Years with AtaxiaUK
After eight years as a Trustee, I have to step back from my duties at Ataxia UK. What was it like? and will l still be a part of its work?
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How am I? Not Ashamed Anymore
I have always been reluctant to tell other people what living with my disability is actually like. I ask why and for the very first time, give a full and frank picture of my life with Friedreich’s Ataxia.
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My Trike and Me
It is exactly four years since I got my trike. I said it would change everything for me. Did it?
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Michael J Fox: Our Parallel Journeys into the Future
Can optimism survive through a progressive medical condition?
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Working with Ataxia
My professional career lasted ten years before I took medical retirement. What did I learn and was it worth it?
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University Challenge
Going to university changed everything for me, but increasing student debt and cuts to support are making it impossible for the current generation of disabled people to go.
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Lockdown Life With Ataxia
It is our 6th week of lockdown, how my has world changed and how am I adapting to it? At a time when we are all being forced to reassess who we are…
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A Wheelchair, Me? – Never.
When I was diagnosed with Friedreich’s Ataxia at fifteen, I swore, and really believed, I would take my own life before using one. What triggered this reaction and what changed my mind?
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Can I Hope Again?
I have had to reassess my relationship with hope and my whole identity after a wonderful development that could change everything.
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My Checklist for Living with Ataxia
Today is International Ataxia Awareness Day. In this post, I look at the wider concept of disability, how it determines how we see ourselves and how we can break free.
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My Support Dog Saved Our Lives
Support dogs are life-changing for disabled people lucky enough to have one – not just in the way most people think.
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Should Disabled People Become Parents?
My kids are 10 and 5 this month. This is an update of a piece I wrote on how we made the difficult choice to become parents.
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I’m not a Superhero, but here’s my ‘Origin Story’
What do disabled people and superheroes have in common?
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It’s Rare ‘Condition’ Day!: AtaxiaUK and Me
February 28th is Rare Disease day. That word ‘disease’ grates on me, I don’t like it at all. A disease is negative, contagious, unpleasant and unwanted. Someone with a disease is broken and…
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World According to Me: 