ALS is always a grim tale to tell, and to hear. Sorry.
What if we could tell a parallel ALS tale that was the opposite of grim? I have an idea. Read on.
ALS, Amyotrophic Lateral Sclerosis, is generally defined as a progressive, neurodegenerative illness with no cure. Often, this straightforward definition is embellished with a clause or two:
- eventually leading to the inability to walk, talk, swallow, or breath.
- including complete paralysis with intact cognition.
- being 100% fatal with an average life expectancy of 2-5 years.
ALS is commonly referred to as a brutal disease; the disease most feared by doctors.
As I mentioned, it’s a grim tale. Sorry, again.
Did you know that the functional decline that accompanies ALS is scored as a way of tracking the progression of the illness? There is a 12-item functional rating scale called the ALSFRS-R: 48 points = A+ = no disability.
See details here.
- Using utensils
- Dressing and hygiene
- Turning in Bed
- Climbing stairs
- Dyspnea (breathing hard with activity)
- Orthopnea (difficulty breathing while lying down)
- Respiratory insufficiency
I am currently a 43 or 44. I was a 41 or 42, until I taught Righty to use a pen. Honestly, I could probably be a solid 44, if I used a rocker-knife. After all, if we can enhance or adapt function to increase inclusion and participation, we diminish the disability.
It is worth noting here that Mr. ALS’s march toward disability does not necessarily include mental, emotional, or spiritual decline. ALS causes motor nerves and muscles to die. The thinking-mind remains completely intact. Spirit, drive, passion, motivation, personality, the ability to give and receive love, all remain in full force.
Let us remember that intact abilities often compensate for innate or acquired disability. People who are blind develop an exquisite sense of touch, smell, and hearing. Kids with spina bifida who have never had use of their legs learn to scoot around as fast as their playmates and siblings.
What Lefty is losing in function, Righty happily takes on with aplomb.
Joining the ALS community through organizations like I Am ALS, I am inspired by a fierceness of spirit, a courageous drive for change, a passionate desire to leave the world a better place. These ALS warriors and their loved ones are my new team. Everyone is welcome. Everyone gets into the game. Kindness is not a zero-some proposition. Love abounds. Courage and hope prevail.
I understand the need for the ALSFRS-R. But, wouldn’t it be great to have a partnered scale to measure positive progress? We could call it the ALSPLS. The ALS Passionate Living Scale, measuring:
- passion for change
- fierceness and drive
- advocacy for self and others
What do you think? Great idea?