Category Archives: Terry (FAer)

Progression involves change, not loss.

Sometimes English isn’t as precise as it should be. The French for missing someone is “Tu me manques”, which would more accurately be expressed in English as “I feel an absence of you”. It’s six months since I gave up … Continue reading

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FA Patient Update 2022

A few people were fortunate enough to travel to Melbourne at the end of February to attend the first in-person FA Patient Update in what seems like forever! The one in early 2020 was cancelled at short notice and brought … Continue reading

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FA and balance… it’s complicated

Balance deficit is often one of the first signals that something’s awry and leads to doctor’s visits, referral to a neurologist and eventually diagnosis for someone with FA. We’re told that balance is so important that through evolution, humans have … Continue reading

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fara Patient Information Forum 2020, note 3 of 3

This is my third and final note documenting what was presented at fara‘s Patient Information Forum in November 2020. It was an information-packed event and I’m delighted I saw it live. Remember, even if you didn’t though, the presentations were … Continue reading

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fara Patient Information Forum, Nov 2020, note 2 of 3

This is the second of three notes I’ll write documenting what was presented at fara‘s Patient Information Forum in November 2020. It was an information-packed event and I’m delighted I saw it live. Even if you didn’t though, the presentations … Continue reading

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fara Patient Information Forum, Nov 2020, note 1 of 3

In previous years, I’ve picked out just a few highlights I’d learned at these info forums but that was mostly because I couldn’t make detailed notes while paying attention. This latest info forum was recorded so I’ve been able to … Continue reading

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Trial participation has huge value, to participants and potentially to everyone!

People sometimes think that because they’re invited to participate in a research trial, participation is free. In the sense that free means without cost, it’s not. Trials are enormously complex, time consuming, and expensive. Participants might not be required to … Continue reading

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Five things I learned at the FARA Scientific Symposium, Melbourne, 25th October 2018

It’s important for all FAers to join the registry Things aren’t as simple as we hoped We are all individuals Bigger isn’t always better (but its a good way to start) If you don’t use it, you’ll lose it. I’m … Continue reading

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A Virtuous Cycle

If you need something done, ask a busy person they say. And they’re right. You see, what keeps busy people busy is that they’re getting things done. Add the thing you need done and it joins their list. They’ll get … Continue reading

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D’you like big “…but…”s? Well this one’s huge!

In the many years since diagnosis, how I describe FA has become pretty standard: with resignation. People would enthuse to me back then about how fast progress was being made in medical research and assure me how convinced they were … Continue reading

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