functional rating scale

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gooseberry

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Anyone know how this is used for prognosis purposes? Is it based on percent decline? The "number" of the rating? Any thoughts are appreciated, Thanks, Steph
 
I don't think you can say well I dropped 3 points in 4 months so I will do the same. On PLM when you chart your frs over time they show the approximate percentile you fall into and which percentile groups are fast, slow and in between. That is presumably based on data.
I do think that sometimes a small progression can knock you down 2 or 3 points which looks worse than it is. When walking score drops stairs may as well, or handwriting,cutting food dressing grooming go together So your score drops noticeably even though you are only a bit worse. Then you seem stable because you still score the same but in reality you are getting worse. Example there is a lot of latitude in the afo question!
 
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That's a great question. I've been wondering the same thing.
-Michael
 
It is used as a poor marker of progression in clinical trials, though newer measures are starting to take hold. It was and is a very imprecise measure for some of the reasons pointed out. It is not anything like, get to zero and you die -- the P/CALS know what is going on much better than the scale, so there's nothing to hitch to it.
 
As Nikki pointed out the "steps" are to broad. For example I can still physically take care of all my needs but if I choose to clip my own finger nails my pointer finger and thumb will hurt for days afterward and lock and cramp the whole time (not to mention my nails look like they where trimmed with a metal cutter), so how does one answer, I chose "need assistance". But when the day comes that i cant do it it will still be "need assistance".

Like everything else it is really not geared to help us as much as to give them a reason to collect our money, its all part of the quarterly death watch, - we call clinic, I have mine tomorrow.

What I am interested in will be the strength comparison from last quarter to this. Even though it is done only by the pressure the doctor perceives you are pushing with to me it is an interesting baseline. I asked him why they don't have tools that measure the pressure and he assured me that his experience made his ability to measure very accurate. I know where I have gotten weaker but it will be interesting to see.

Last month I participated in a "finger study" being done by Penn State and was surprised to find out that my right fingers where weaker than my left. As I am right handed and have had more pain in my left hand this shocked me some. There study used pressure points so I am pretty sure they where accurate. My left hand did not show less dexterity then my right but more strength. I find this interesting although it does nothing to help with the disease and its progression - but then again nothing does.
 
We did set up a profile on patients like me. Steve has clinic on Friday so we were looking at how he rated himself for this clinic vs the last. Interestingly when he had his va assessment they rated him quite diffetently based on their observations. Really it is just a number but I was curious.
 
It is a good question that I think we all ask. We want to know what to expect and it is hard to think that no one can tell us. More of the SUCK in ALS.
 
At my clinic one of the PTs is doing a study measuring strength with equipment so there are absolute numbers recorded every time. It is part of every visit for me and even though it is technically a study the neuro looks at the info and I am shown the numbers and given a printout if I want. They don't test individual digits though. But otherwise all the extremity muscle groups
 
Slightly different (sorry) but when I saw the physio recently she did this balance test where each type of balance gets a score. Apparently my static balance has improved. Mmmmmm...I told her it hasn't, I have just learnt to adjust how I do things, only my right side (so far) is affected.
Then we did some walking balance things. I reckon I may have scored in the negative. I was quite amazed that the medical profession think just because I can pick a pen up off the floor my balance is good to go.
Maybe they should ask my back what it thinks my balance is like...by the end of the day my back is extremely sore from all the compensation. I wonder if there's a score for that...
Sorry, I'm very dark at the medical profession at the moment.
God bless, Janelle x
 
Steve has had all sorts of measurable grip and strength tests for his hands and fingers. They always say his leg strength is good but I dont know how this can be accurately assessed. They have only known him with als and atrophy. His legs are maybe 35 percent of the size they were pre als. Same with his arms.
 
Janelle I know what you mean. When Chris was going to a day centre each week, it was geared towards rehabilitation but that's all that is available to give PT and OT help.

Anyway he would beam at me about how well he scored in balance tests they did with him. In reality he was falling with increasing frequency at home. He would claim his falls had nothing to do with ALS ...
 
I asked the neuro at clinic today. She said they are using it as a standard so when consulting with another physician they can say the rating is 30 and everyone knows what it means for where the patient is as a general guideline. She said they monitor the slope of decline and are trying to correlate it with other potential markers for progression assessment. So a steeper decline would mean a faster progression and a flatter decline a slower progression. She said it is one of many things they look at but is interesting since it is a.self report.
 
@gooseberry they just love their numbers.

I must say that these things make me realise that someone makes an awful lot of money thinking these things up then proving whether or not they are helpful and at the end of the day they are just numbers and when done by self assessment they are less than 'just' numbers ;)
 
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