Many ALS centers use the FRS to get a general, overall impression of how a person is doing. There are three questions for each area: bulbar (chewing and swallowing muscles), activities of daily living (arms), mobility (legs), and breathing. I’ve decided to post my FRS updates here, so I don’t sound like I’m too negative, whining or complaining when I post. The max FRS is 48; my current score is 10. The questions that derive my current score are posted after the graph, my most current answers in bold.
Speech (bulbar)
Speech is about more than how your voice sounds. It’s how well you feel forming words in your mouth. Problems thinking of the right word shouldn’t affect your answer to this question.
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Perfectly normal compared to before you had ALS symptoms.
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You notice a difference in the way your voice sounds or it’s harder to make sounds.
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You need to repeat yourself because people cannot understand all of your words.
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In addition to your voice you use non-vocal communication (writing, machines, etc.) -
Most people cannot understand you. You must use non-vocal communciation.
Salivation
Salivation is about how much watery saliva you have in your mouth. A problem with the thick, mucus phlegm that you might have in the back of the throat is not part of this question.
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The amount of saliva you have is perfectly normal compared to before you had ALS symptoms.
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There is more saliva but it is not too bothersome and you do not need to wipe your mouth during the day.
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You have to wipe the corners of your mouth on occasion during the day. This includes wiping the corners of your mouth with your finger or hand. -
You have to use a tissue to wipe your mouth during the day. You may have bothersome drooling at mealtime.
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You are having a lot of saliva most of the day. You have to use a tissue or cloth most of the day because of drooling.
Swallowing
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Your ability to chew and swallow is perfectly normal compared to before you had ALS symptoms.
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It takes you longer to finish a meal. You may be taking smaller bites and swallowing with greater care. You may have problems with coughing with meals. Please note that the medical term “choking” is what you would call “coughing”. It signals that some bits of food are going down your breathing tube instead of your food tube.
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You are avoiding some food because it is too much trouble to chew and swallow. Some common foods that people avoid are some meats, dry cookies, lettuce, nuts, and soft bread.
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You have gotten a feeding tube. You may be taking much of your food by mouth, but you have a feeding tube and are using it for fluids or medication. -
You are taking almost all of your food and liquids through the feeding tube. You might take a few bites of you favorite food by mouth to satisfy a craving.
Handwriting
Handwriting is about how you hold the pen (with your hand that was dominant prior to ALS onset) and how the words look.
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The way you hold the pen and how the words appear is perfectly normal compared to before you had ALS symptoms.
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Holding the pen may be awkward even if the words still look normal.
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You have cut down on how much you write because it is too tiring or the words are not legible as you write more.
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You can hold a pen, even if it is very difficult, but you are not writing more than to sign your name.
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A pen either falls out of your hand or can be removed from your grip very easily. You are no longer signing your name.
Cutting food and handling utensils
I have a feeding tube:
Just a moment…-
Your ability to use the feeding tube is completely independent and very easy. Your hands are able to open and close all of the fasteners, open the cans of food, and perform all of the other activities around a tube feeding without help and perfectly normal compared to before you had ALS symptoms.
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You still do not need any help to give yourself the tube feeding meals but it is somewhat awkward. It is not perfectly normal.
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You can do most of the tube feeding by yourself but you get help with some of the motions.
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You can help a little bit with the tube feeding meals.
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Others do the entire tube feeding meals for you.
Dressing and hygiene
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It is just as easy to get dressed as it always has been; it is perfectly normal compared to before you had ALS symptoms.
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Dressing is just a little different than before. It may be slower or somewhat awkward to dress.
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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.
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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. -
You cannot help the person who is dressing you.
Turning in bed
This is about rolling over in bed and pulling up the covers, not your ability to get in or out of bed.
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You can move in bed just as easily as you ever could. Your ability is perfectly normal compared to before you had ALS symptoms.
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There is some difference compared to before you were ill. It takes more effort to turn OR pull up the covers. One activity could be normal but one is awkward.
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It is very difficult to either turn in bed or pull up the covers but you can do both by yourself. You can turn in all directions without help (side to back and back to side on both sides). -
You can get the turn started but cannot complete the turn without some help. You need a little push to get turned.
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You cannot turn by yourself on at least one side.
Walking
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Your ability to walk is perfectly normal compared to before you had ALS symptoms. You can still run if you want to.
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Walking is slower. Balance is not as good as it had been. There is at least a small difference compared to normal.
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This would include a cane, walking stick, ankle brace (ankle foot orthotic device -AFO), walker, or wheelchair. This also includes situations where your physician has ordered a piece of equipment even if you are not using it.
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You are unable to walk around the house but you might still be able to bear your own weight during transfers or shuffle a step or two. -
You are unable to make movement that would contribute to walking. You can no longer bear weight during transfers. You might still be able to move your leg a little.
Climbing stairs
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Your ability to climb up and down stairs is perfectly normal compared to before you had ALS symptoms.
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It takes you a little longer to go up or down the stairs. You are being more careful on the stairs.
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Your balance is not as steady as it was before you were ill. You might be fine going one way but have trouble in the other direction.
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You REQUIRE the handrail or help in some way. You would not take the flight of stairs without either a handrail or a cane or someone helping you.
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You might be able to take a few stair steps but you cannot go up or down a full flight of stairs.
Dyspnea
Dyspnea is about your level of breathing difficulty during normal activities.
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Your breathing is unchanged; it is perfectly normal with all activities compared to before you had ALS symptoms.
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You breathe a little harder with at least one activity, such as walking.
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You breathe harder when bathing, toweling off, and getting dressed. Or you might be short of breath when talking on the phone. Perhaps some other activity of daily living (ADL) causes you to breathe a little harder (eating, standing and brushing your teeth, or others).
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You have some periods of shortness of breath when you are not doing an activity. Your breathing might be uncomfortable when you are sitting watching TV or visiting with a friend. This might only happen when you are lying down. -
Your breathing is uncomfortable most of the time. You know that you are near needing a breathing machine to take over for your diaphragm. (This breathing machine is not BiPAP. It is a ventilator and tracheostomy.)
Orthopnea
Orthopnea is about how your breathing on your back might be different than while sitting or standing.
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You have no change in your ability to breathe on your back; it is perfectly normal compared to before you had ALS symptoms.
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You have noticed that your breathing is different when you are flat on your back. This might be a vague discomfort or feeling that your chest is a little heavy. You are not raising the head of your bed or using more than 2 pillows under your head.
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You are clearly uncomfortable breathing when on your back. You have started to raise the head of your bed (as in a hospital bed) or you are using 3 or more pillows under your head.
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You are sleeping with the head of your bed raised about 45 degrees or more. You might be sleeping in a recliner chair or in your power wheelchair. -
You cannot lay on your back for even 5 or 10 minutes.
Respiratory insufficiency
Respiratory insufficiency is about how dependent you are on mechanical help for breathing, mostly from BiPAP
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You are not using BiPAP (or any variation such as VPAP) to help you breath. And, your physician has not recommended it to you.
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You are using BiPAP at least for some portion of the day or it has been ordered for you even if you are not using it.
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You are using BiPAP most nights for at least 4-5 hours each night.
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You are using BiPAP for most of the day and night. You are uncomfortable without it.
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You can no longer breathe comfortably using BiPAP. You are using a ventilator to take the place of your diaphragm and other breathing muscles.
Because I have only limited functional use of one hand, I use 