[Terence O'Hanlon]

Idebenone is very expensive and can’t be easily sourced from Australia (If it’s a drug it would need clearance to import. It’s not approved by the TGA (our FDA) so better not to ask that question!)

It hasn’t been proven out despite a number of clinical trials.

So in 2017 (after about seven years of taking Idebenone) I switched back to CoQ10. 300mg x 2 x day. My cardiologist said “Wow that’s a lot but if you’re not noticing any side effects then ok I guess.”

[Terence O'Hanlon]

Depending on how you categorise them, it could be said that I use countless assistive devices!

I use a wheelchair in the house, a motorised scooter when out on my own, a manual wheelchair with lever drives when out with someone. I have a recumbent trike for self-powered exercise.

Inside my home I have lots of grabrails to help with transfers. They’re assistive devices.

My shower chair could be classed as an assistive device. Even the lanyard I use to hang my phone around my neck could. I could go on and on!…

[Terence O'Hanlon]

Whoever said your parents “don’t have” the gene that causes FA isn’t quite right. Everyone has it. In FAers it’s faulty but it’s there. In non-FAers it functions properly… and it’s there.

Check with a neurologist or a genetic counsellor. Make sure you understand what they tell you, even if that means asking them to explain it over and over in different ways.

Be aware also that FA is a very individualised condition. The list of symptoms you were told about is an aggregate of symptoms that have presented in many other FAers. The list of actual symptoms that present in any specific FAer may vary considerably, as can the speed of progression of the condition.