I’m Still Functioning

August 29, 2017 - als

Dagmar Living Well

  • Speak clearly
  • Use a flare and blade when we eat
  • Hand-write your appreciate we notes

The above (plus a few more) were on my mother’s list of good manners that she approaching me to follow when we was a kid. They positively helped me by a years and valid to be profitable habits for functioning good in today’s world.

But who knew I’d have to revisit “Mom’s List” each time we met with my neurologist during a ALS clinic? And who would have guessed that ALS would force me to mangle those really manners and rewrite my own?

Let me behind adult and explain.

One protocol all ALS patients share is holding a ALSFRS-R test. The letters mount for “ALS Functional Rating Scale-Revised,” that is a list of 12 questions with mixed choice answers that marks a march of an ALS patient’s symptoms. Originally grown behind in 1996 (with one rider in 1999 — thus, a “R”), a ALSFRS-R has been in use worldwide for a past 18 years.

Incredibly, these 12 questions do a good pursuit covering a “Big 3” physique tools influenced by ALS: arms/legs, speech/swallowing, and breathing. With a probable high measure of 48 points, ALS patients are likely to remove one indicate per month over a march of their disease.

Also implausible is a fact that these same 12 questions can make or mangle studies and clinical trials of intensity drugs for ALS. For example, a new drug Radicava (edaravone) done it to marketplace formed on a decrease that was 33 percent reduction in ALSFRS-R scores in patients on Radicava compared to a remedy group.

Since my neurologist asks me a 12 questions each time I’m in for a hospital visit, we figure I’ve taken a exam about 28 times — approach some-more than adequate for me rise a few opinions about a test’s aptitude and context in today’s world.

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

I know we have detectable debate issues and I’m intelligible with repeating, though we remind my neurologist that many mumbling teenagers with their eyes glued to cellphones would measure reduce than me. She agrees, though still gives me usually dual points.

At doubt 3 I’m asked, “How’s your handwriting?”

“You meant texting?” we respond, indicating out that most no one writes anymore. A doubt germane 18 years ago usually isn’t germane today. We no longer pull pencils, we pull buttons. We form emails, e-greeting cards, and send messages on Facebook. “Good point,” my neurologist answers while handing me a ballpoint pen. “Let’s try essay your name.” we do, and am awarded 4 points.

Then she asks, “Are we means to eat regulating a flare and knife?”

I indicate out another pointer of a times, in that American eating habits have altered given a exam was initial developed. Nowadays, with a smoothie for breakfast, a sandwich during lunch, and pizza for dinner, we can go by many dishes but wanting a flare or knife. “But,” we supplement with a smile, “I make my father take me out to a good grill once a week, so we stay in practice.” we benefit 4 some-more points!

Then we come to, “Are we means to stand stairs?”

Here my neurologist concedes to my evidence that due to where we live, stairs are tough to find. Our city is flat, homes are one-story, and even stores are usually one level. “Will we count a escalator during a mall?” we ask with a wink.

We come to an agreement that, if I had to stand stairs, I’d reason a handrail. That forsaken me down to one point.

Sorry, Mom – I don’t pronounce clearly, don’t write notes, and frequency use a flare and blade anymore. Am we a amicable disaster since we don’t duty a same approach as before?

I introduce adding an annexation to a ALSFRS-R — one that takes into comment a ability to successfully transition to regulating new ways to function. Because detriment of debate is not a failure; adopting and regulating debate inclination to say communication is functioning. Loss of a ability to travel is not a failure. Neither is losing a use of a hands or a ability to swallow foods. Using rollators, wheelchairs, eye-gaze record and even transitioning to carrying a feeding tube are all signals that we are stability to function.

And a ability to duty and continue to attend in life’s many smashing moments strengthens a peculiarity of a lives.


Note: ALS News Today is particularly a news and information website about a disease. It does not yield medical advice, diagnosis, or treatment. This calm is not dictated to be a surrogate for veteran medical advice, diagnosis, or treatment. Always find a recommendation of your medicine or other competent health provider with any questions we might have per a medical condition. Never negligence veteran medical recommendation or check in seeking it since of something we have review on this website. The opinions voiced in this mainstay are not those of ALS News Today or the primogenitor company, BioNews Services, and are dictated to hint contention about issues regarding to ALS.

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