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…Keep reading
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?Keep reading
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…Keep reading
My Trike and Me
It is exactly four years since I got my trike. I said it would change everything for me. Did it?Keep reading
Michael J Fox: Our Parallel Journeys into the Future
Can optimism survive through a progressive medical condition?Keep reading
Working with Ataxia
My professional career lasted ten years before I took medical retirement. What did I learn and was it worth it?Keep reading
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.Keep reading
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…Keep reading
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?Keep reading
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.Keep reading
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.Keep reading
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.Keep reading
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.Keep reading
I’m not a Superhero, but here’s my ‘Origin Story’
What do disabled people and superheroes have in common?Keep reading
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…Keep reading