FRS ramblings

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Kristina1

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Joined
Jan 26, 2017
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822
Reason
PALS
Diagnosis
03/2017
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US
State
MA
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Grafton
I've been in the ALS TDI Precision Medicine Program since I was diagnosed-- it's a whole 'nother subject but they have monthly speech tracking recordings, and recently my husband and I went back and listened to them all and it was fascinating (also sad) to hear almost 3 years of speech decline sped up into one sitting.

Anyway, I just did my monthly FRS and I got 16. And I feel like thhat can't possibly be right. I don't feel I'm declined to the degree of such a low score.I always wonder if I'm doing it wrong, but the FRS is just so vague and broad. For example, this time I debated over how to answer the question about turning in bed. I can turn from my side to my back, but not from my back to my side. So I'm straddling the line between "with great difficulty" and "needs caregiver to assist." I feel like I have this or similar dilemmas about most of the questions.

It especially bothers me as it's used as measurable data in clinical trials. I'm really glad the study I am followed by also uses the ATLIS. I don't feel like a 16.
 
I get what you are saying. it is not sensitive to nuance. In the turning example if you assign the lower score you could get a lot more disabled and have it stay the same number. It was designed as a research tool not a clinical one but I too am glad they have better biomarkers.
 
Yeah, so my score tends to stay the same for long-ish periods and then drop several points at once, not because the rate of my progression sped up, but simply because the tipping point for the questions was reached. To me, this seems terrible for research because it looks like plateaus are occurring when they actually aren't.
 
I have trouble with answering the questions too. I think people with mnd should develop a scale or improve on the frs
 
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