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Category Archives: Terry (FAer)
Appreciating my own value part III
This is the third post in a series of 3. Part I was about how we must appreciate our own value despite sniping from media and politicians spouting lazy populist rubbish about needing to cut funding for the NDIS. The … Continue reading
Posted in Terry (FAer)
Tagged Ataxia, Friedreich, lifeline, NDIS, suicide, value
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Appreciating my own value part II
Tomorrow it’ll be May which means it’s the time to raise funds for FA research via the Lend Us Some Muscle campaign (more information here). It’s not hard to get involved. Simply decide how you’ll be active and when during … Continue reading
Posted in Terry (FAer)
Tagged fara, lend us some muscle, LUSM
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Appreciating my own value, part I
We need to change the focus when people speak of the NDIS. Often at the moment there’s a concentration on the cost of the scheme but instead people should look at what it seeks to achieve relative to the investment … Continue reading
Posted in Terry (FAer)
Tagged Australia, Disability employment, Friedreich Ataxia, NDIS
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Choices, choices…
We FAers must remain always hopeful despite the slings and arrows. We deal with with coordination and balance issues that get progressively worse over time. As is oft-repeated, there’s been neither a treatment nor a cure proven in trials for … Continue reading
Posted in Terry (FAer)
Tagged attitude, FAer, Friedreich, Milne, optimism
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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
Posted in Terry (FAer)
Tagged Ataxia, autonomic, driving, FA, Friedreich
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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
Posted in Terry (FAer), Uncategorized
Tagged Ataxia, FA, FAer, fara, Friedreich, Omaveloxolone
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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
Posted in Terry (FAer)
Tagged Ataxia, balance, discombobulation, FA, Friedreich, vestibular
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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
Posted in Terry (FAer), Uncategorized
Tagged Ataxia, fara, Friedreich
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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
Posted in Terry (FAer), Uncategorized
Tagged FA, fara, Friedreich
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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
Posted in Terry (FAer)
Tagged Ataxia, FAer, Friedreich, MOXIe, Omaveloxolone
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