I’m Still Functioning

I’m Still Functioning

Dagmar Living Well

  • Speak clearly
  • Use a fork and knife when you eat
  • Hand-write your thank you notes

The above (plus a few more) were on my mother’s list of good manners that she expected me to follow when I was a kid. They certainly helped me through the years and proved to be valuable habits for functioning well in today’s world.

But who knew I’d have to revisit “Mom’s List” every time I met with my neurologist at the ALS clinic? And who would have guessed that ALS would force me to break those very rules and rewrite my own?

Let me back up and explain.

One ritual all ALS patients share is taking the ALSFRS-R test. The letters stand for “ALS Functional Rating Scale-Revised,” which is a list of 12 questions with multiple choice answers that tracks the progression of an ALS patient’s symptoms. Originally developed back in 1996 (with one revision in 1999 — thus, the “R”), the ALSFRS-R has been in use worldwide for the past 18 years.

Incredibly, these 12 questions do a good job covering the “Big 3” body parts affected by ALS: arms/legs, speech/swallowing, and breathing. With a possible high score of 48 points, ALS patients are predicted to lose one point per month over the course of their disease.

Also incredible is the fact that these same 12 questions can make or break studies and clinical trials of potential drugs for ALS. For example, the new drug Radicava (edaravone) made it to market based on a decline that was 33 percent less in ALSFRS-R scores in patients on Radicava compared to the placebo group.

Since my neurologist asks me the 12 questions every time I’m in for a clinic visit, I figure I’ve taken the test about 28 times — way more than enough for me develop a few opinions about the test’s relevance and context in today’s world.

First up, I’m asked, “How is your speech?”

I know I have detectable speech issues and I’m intelligible with repeating, but I remind my neurologist that many mumbling teenagers with their eyes glued to cellphones would score lower than me. She agrees, but still gives me only two points.

At question three I’m asked, “How’s your handwriting?”

“You mean texting?” I respond, pointing out that practically no one writes anymore. A question relevant 18 years ago just isn’t applicable today. We no longer push pencils, we push buttons. We type emails, e-greeting cards, and send messages on Facebook. “Good point,” my neurologist answers while handing me a ballpoint pen. “Let’s try writing your name.” I do, and am awarded four points.

Then she asks, “Are you able to eat using a fork and knife?”

I point out another sign of the times, in that American eating habits have changed since the test was first developed. Nowadays, with a smoothie for breakfast, a sandwich at lunch, and pizza for dinner, we can go through many meals without needing a fork or knife. “But,” I add with a smile, “I make my husband take me out to a nice restaurant once a week, so I stay in practice.” I gain four more points!

Then we come to, “Are you able to climb stairs?”

Here my neurologist concedes to my argument that due to where we live, stairs are hard to find. Our city is flat, homes are one-story, and even stores are only one level. “Will you count the escalator at the mall?” I ask with a wink.

We come to an agreement that, if I had to climb stairs, I’d hold the handrail. That dropped me down to one point.

Sorry, Mom – I don’t speak clearly, don’t write notes, and hardly use a fork and knife anymore. Am I a social failure because I don’t function the same way as before?

I propose adding an addendum to the ALSFRS-R — one that takes into account our ability to successfully transition to using new ways to function. Because loss of speech is not a failure; adopting and using speech devices to maintain communication is functioning. Loss of the ability to walk is not a failure. Neither is losing the use of our hands or the ability to swallow foods. Using rollators, wheelchairs, eye-gaze technology and even transitioning to having a feeding tube are all signals that we are continuing to function.

And our ability to function and continue to participate in life’s many wonderful moments strengthens the quality of our lives.


Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.

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  1. Charlie says:

    Of course, but …….the doctor isn’t asking us how we use street-smart ruses to make every day slightly more bearable; the doc is asking about specific actions whether we carry them out or not. Our joshing apart, the crucial thing is how well we could do the ALSFRS specifics.

  2. Albert Brooks says:

    To build on Charlie’s point – I don’t think the point of the test is to measure your positive attitude, or even to how well you overcome the challenges of living with ALS, but rather to attempt to measure the clinical progression of the disease. You could just as easily measure the ability to text instead of writing, but it would probably have a different numerical score attached to it, since it has a different degree of difficulty…for those living with ALS.

    That said, I do appreciate the article for taking a positive, adaptive approach to the things the test happens to measure.

    (I am a caregiver, wife diagnosed 1.5 years ago, symptoms for 3)

    • Dagmar Munn says:

      Thank you for your comment Albert. My objection to the ALSFS-R is questioning the validity of measuring physical function by way of a simple questionnaire. I would rather trust measurement by concrete physical methods that don’t allow for “fudging the score” by personal interpretation or cajoling 🙂

  3. Albert Brooks says:

    Thanks for your interesting reply. So you are saying it is not objective ENOUGH? I can see that, though.

    What other ways could you see functionality being measured more objectively?

    Or maybe the best we can hope for is a relative measure? For any given person, they were at x last month, however you measured/interpreted it, and this month you are at y.

    • Dagmar Munn says:

      Albert – – I don’t feel that the ALSFRS-R is “objective” when it is based on non-objective observation and self-reporting. What I am wishing for is a simple battery of standardized physical tests (like pulmonary function forced expiration) that measure strength, coordination, balance, function, etc. This just might be a good topic for one of my future columns!

  4. Gary Gehiere says:

    In the one year since diagnosis, being Apr 6, 2018, I have been given the ALSFR-R test only once. Not until I read your article today did I realize what it was. No one explained the purpose or outcome. Being a retired accountant, I realized that the answers could be added up and so I did that. I put the total at the bottom, 32. Then 32/48 and I got 75%. Upon handing it in, my neurologist increased my score by 2 points to 34 on the grounds that a muscle deficiency in pursing my lips adversely affected another outcome. She was on my team, for sure. I snapped a picture of the test before I handed it in, and didn’t see the change she made. Since I have the ability to speak, I had to let it go. I made up my own daily chart to track the ‘big three’ plus my vitals and routines. Why? I like a ‘heads up’ to begin to plan for possible the next step. Just trying to enjoy the journey, one day at a time.

    • Dagmar Munn says:

      Hello Gary, I agree – – tracking id vitally important. Sounds like you are on top of your own numbers…and being wise to plan ahead. Let’s hope your journey is a slow one 😉 Stay strong my friend!

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