Category Archives: Terry (FAer)

Let FAN be your “tap code”

Remember Jim Stockdale? I wrote about him here. He’s the champion of self-taught resilience, the guy who emphasised the importance of balancing a positive expectation of a future outcome with a realistic perspective on the harsh realities of today. Well … Continue reading

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The Stockdale Paradox

The Stockdale Paradox is named for Jim Stockdale. It was described by Jim Collins in the business book “Good to Great” and it has tremendous relevance to how we approach Friedreich Ataxia. Jim Stockdale was the highest ranking American naval officer … Continue reading

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“Swept off my feet” isn’t the right expression

It’s daunting, getting a wheelchair for the first time. For me, it took a long time, first to recognise that it really was inevitable and then to realise that the time had come. If I’m honest with myself, they probably … Continue reading

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Idebenone

I take Idebenone, as do many FAers, but I take it in the knowledge that neither functional nor neurological benefits have been proven via clinical trial (and there have been many trials). However, it is a powerful antioxidant and therefore, … Continue reading

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I wish I’d done this ages ago!

I recently got my driving licence back. I’m authorised to drive “CA” (only automatic cars, not manual anymore) and restricted to “MV” (modified vehicle – hand controls). Both of these things work in my favour though. I’ll be able to … Continue reading

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Fully bulk-billed (two out of three anyway)

If you have FA, make sure your GP has you on an EPC or Enhanced Primary Care Plan. There are three important things you’ll get from this: Once, maybe even twice per year, they’ll have you go through a pretty … Continue reading

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Is this progress?

There’s an American political joke that says “If the opposite of ‘pro’ is ‘con’, then the opposite of ‘progress’ must be ‘congress”. I reckon for me the opposite of progress is progression. Probably the thing I find most frustrating about … Continue reading

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When life gives you lemons… (or “Making the most…” part 2)

“When life gives you lemons, make lemonade. Then try to find someone whose life has given them vodka, and have a party!” (Ron White) Ron White had the right idea. Having to deal with FA every day is an ongoing … Continue reading

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Are you getting the most out of your disability? (part 1)

I’m sure we can all agree that being disabled sucks. However, there are some things available to lessen the suckiness a little and you should make sure you take advantage of any that are available to you. Any disability makes … Continue reading

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There are too few FAers in the world

I’m sure none of us would wish FA on anyone. A key downside for those of us who do have it though is that because it’s so rare, not enough monitoring’s been done, not enough data’s been collected for anyone … Continue reading

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