Kristina1
Senior member
- Joined
- Jan 26, 2017
- Messages
- 822
- Reason
- PALS
- Diagnosis
- 03/2017
- Country
- US
- State
- MA
- City
- 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.
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.