ALS Function rateing scale

[Chase_Corin]

ALS Functional Rating Scale

Has anyone had a look at this?

When my dad was diagnosed we found it and at that time he was about a 30 our of 40 40 being the best and 0 being the worst.

Yesterday we did it again and dad's down to a 16.... but he can still walk and talk with difficulty. So I am wondering if this scale is accurate in any sence of the word and if it is accurate if we should be prepareing for more drastic means to ensure Dad's comfort and stability in the household.

 

[trfogey]

Chase_Corin,

On the site that you linked, you should use the ALSFRS-R score, rather than the ALSFRS score with that tool. The ALSFRS-R is scored on a scale of 0 to 48 and is believed to give a better view of the overall condition of the PALS because it more accurately reflects the importance of respiratory issues for the PALS.

And be careful about reading too much into the meaning of the ALSFRS-R score. Our late friend Joel C had an ALSFRS-R score below 10 for the last year and a half of his life, and I don't think anyone who knew him would even attempt to contend that he was anything less than a vibrant and vital part of this forum that entire time. My own personal ALSFRS-R score is 18 and has remained there for nearly a year and I think I'm a long way from being done with this life.

The best use of the ALSFRS-R score is to track PALS' progression over time and to get some idea of when certain supportive measures and equipment can be expected to be needed by the PALS. It's not intended to be used as any kind of "crystal ball" to predict the PALS' future because patients can live and be productive and happy for many years even at a score of zero if the right support is in place.

Hope this helps.

 

[Katie C]

This is just my curiosity speaking I guess.... If you did the survey right after diagnosis, and then 8 months later the same survey indicated some significant progression and this caused you to question the validity of the entire survey... why put yourself through the anxiety of doing the survey? Really not trying to be negative here but sometimes we can spend so much time looking for answers that don't exist that we can miss those good moments we have left together...

 

[dian_na]

I agree with trfroggy, I wouldn't ignor the numbers however don't dwell on the numbers because they do change and taking them daily will only freak you and your pals out. Because for one you look at him everyday you know w hat he can and can't do, you don't need frs to tell you. Plus after being rested the number goes up n down with a gradual decline after time so testing daily is pointless.
if he is having dificulty walking and such begin working on getting his mobile chair, locate a walker and a transport chir to use, have all that stuff in place ahead of time,
Don't get hung up on the numbers, treat the patient not the number

 

[Jason's Dream]

I can't find where they explain what the "number" means. Jason is an 8 by that test.