Imagine instead of driving a new automatic car you had an old diesel with manual steering and a dodgy clutch. With ataxia that is what life feels like. Simple tasks like walking and talking take active thought and effort, 24 hours a day. The autopilot function we take for granted is broken which is physically and mentally draining. And on top of that, where just trying to get through the day without falling over is hard enough,  you know no matter what you do, it is only getting worse.

For my husband Toby it took 5 years to get a diagnosis of Friedrichs Ataxia.  Life with ataxia is hard enough without a battle for the right diagnosis and some support along the way.  This International Ataxia Awareness Day (IAAD) I'll be helping to end slow ataxia diagnosis by walking a copy of the Ataxia UK medical guidelines to my GP surgery. With better awareness and understanding of this rare disease I hope patients will receive quicker diagnosis and better support along their difficult journey.