Wednesday, 26 April 2017

FRS Report

It's not bad enough that I have this terrible cold, but I've decided to do another Functional Rating Scale, a broad based self-evaluation of my general functionality. The ALS-FRS covers 12 areas of basic health functioning, each area scored from 0 to 4. A score of 48 is full functioning. A score of 0 is dead. You can find a full research report and explanations at the ALS C.A.R.E. Project. My score today is 24, down from 28 in December and 30 last summer.

1. Speech - Here I scored a 3. This diminishment reflects the issues I have on occasion with word formation, my odd bit of stumbling in speech, and a barely perceptible slurring that I see, but that most others don't. It doesn't happen a lot.

2. Salivation - I drool. There is no way around it. However this is not a constancy of drool, nor is it the Homer Simpson donut drool. I have markedly excessive saliva. I need to wipe it away from the corners of my mouth, most times with a napkin or my fingers. It's not bad enough that I need a bib yet, nor constant wiping, nor medication. I score a 2 on this measure.

3. Swallowing - I score a 2 on this measure as well, although some would argue that any swallowing and choking issues I have are of my own making. I eat too fast. I take big bites. However this has been the norm for me my whole life, and now that norm is being forced to change because of ALS. What many don't know, and don't see, is that I am having trouble eating some foods, specifically bread or any particularly dry foods. It's odd in that it would seem having excess saliva would help this. Alas, it does not. Dry foods and sticky foods are becoming difficult for me to eat and swallow.

4. Handwriting - This is an almost impossible measurement for me. My cursive has been non-existent for a great many years. I always print in block capitals. Even so, my printing has always been very messy. So I pay attention to how it feels to print, and write, I pay attention to the sloppiness, the errors, the number of over-writes I must do. There are a lot of them. The most important measure is that I write less and less by hand, simply because the act writing tires me out. So I score a 2 on this.

5. Cutting food and handling utensils - I don't have a feeding tube. I seem to be well able to cut my own food, to handle a knife and fork, to feed myself with minimal spillage. However it is diminished in some ways. For example, I use gadgets for most of my food cutting these days, although I can still easily saw my way through a giant steak. So I score this as normal, with a value of 4.

6. Dressing and hygiene - Score 2. This is an area of some self debate for me. I can still pretty much dress myself, but only by using things like the M-rail to re-position during the process, or by using some tricks in terms of leg placement, or more likely by asking for help. Almost everyone around me has had to help me pull up my pants at some point. Several have had to help me get them off.

Intermittent assistance or substitute methods would give me a score of 3. It goes as follows. "You might not need any help to dress but you are now wearing clothes that are easier to get on and off. You might have changed the way you put on your clothes. This includes the situation where your arms are normal but you have to sit to dress due to leg weakness or poor balance. You might be getting occasional help to dress, especially if you have to hurry."

Need attendant for self-care would give me a score of 2. It is defined thus. "You can still help some when dressing such as moving your arm or leg to put it into position. You could not get dressed by yourself without a struggle." This is most like where I am these days, so 2 I take.

7. Turning in bed and adjusting bed clothes - Alas, here I only score a 1. If you've seen me do this, you will understand what a great difficulty this is. You can see it in my dressing as well. In order to turn over these days, I must rotate my upper body so that I can grab something, hopefully an M-rail but sometimes a human helper. Without these aides, I could not turn over all, except in the rarest and most fortunate of circumstances.

8. Walking - I can't walk. At all. I get a zero here.

9. Climbing stairs - I can't climb stairs. At all. I get another zero here.

10. Dyspnea - This means difficult or laboured breathing. If you have been with me for any length of time at all, you've seen me go through instances where I run out of breath or seem to have trouble breathing. It happens whether I am doing something or just sitting there. It happens in conversation. It happens with the least exertion. For this, I score a 1.

11. Orthopnea - Orthopnea is the same as Dyspnea except it happens when you are laying flat, perhaps sleeping or just resting. Oddly enough, this doesn't seem to affect me at all yet. I seem to breathe just fine when I sleep, so I get a score of 4 on this.

12. Respiratory insufficiency - This is just asking if I need a Bi-PaP or other mechanical device to breathe. I do not, so I get a 4 on this too.

In summary, most of me is affected by ALS. My upper body continues to function, perhaps at about 50%. My breathing is still good, although I do run short of breath at times. My core muscles are substantially diminished, which leaves me unable to sit up without a brace or support. My legs are gone, completely. The biggest problems for me these days are in the weakness of my arms and shoulders. I have lost my ability to lift myself, and I am losing my ability to lift almost any weight above about 10 pounds. I am slowly losing my body to ALS, but I am not dead yet.


  1. FYI, I've been at zero on my FRS for about a year now. My ventilator and my food peg keeps me alive.

    1. You are a brave man, Mike. I am not sure I can do that. The FRS for those using ventilator and peg is different that for those of us who do not.