CHARLOTTE, NC, December 17, 2017: During a recent visit from a caregiver, my friend mentioned a question he had asked another ALS victim years ago. “What do you think about most on a daily basis as you deal with this disease?” he asked.
“First,” replied the patient, “I’m always thankful when I open my eyes and know that God has given me another day.”
In the world of ALS, you soon realize that vertically is far better than horizontal and a “vertical day” is, by definition, a blessing. Having fought this battle myself for a few years, I know precisely what he means. Each night when I go to bed, I wonder if the day I just lived was my last.
“Secondly,” the ALS patient replied, “I wonder what I will not be able to do today that I could do yesterday.”
Amyotrophic Lateral Sclerosis – Clinic Day
Everything is relative with ALS. Each victim meets each challenge differently. The disease progresses slowly, but exactly what “slowly” means is entirely different from one person to the next.
Every three months, the ALS care services hold a clinic in which patients come early and meet each of their specialists. It’s a time-consuming process for everyone, but the idea is to do everything at one time so that doctors and patients alike are not constantly dealing with appointments on a regular basis.
Often the person with ALS only needs to speak at length with two or three of the doctors while the others are mostly status updates. Toward the end of the session, patients see a neurologist, which is typically the longest meeting because all the information is compiled and recorded.
Finding the status quo with Amyotrophic Lateral Sclerosis
This week was clinic week and, for the most part, little had changed in my condition since the previous gathering. To my way of thinking, I considered that a victory in and of itself.
On this occasion, I spent most of my time with the physical therapist, the respiratory physician and, of course, the neurologist.
The breathing session is usually longer than most of the others because there are certain tests that need to be conducted. I call the worst one “seeing how long you can exhale before you pass out.”
Though my arm strength has been reduced slightly, I still have strength in my hands which is especially good when it comes to using the computer.
Benign is good. I’ll take it
During my time with the neurologist, she checked my arm, leg and hand strength as well as studied the respiratory records. Near the end of the session she looked at me and said,
“Everything looks good. It seems your ALS is generally benign for now.”
I never thought I would come to love the word “benign” as much as I do today. Indeed, everything in ALS is relative but I know that “benign” is good as opposed to other words that are far more foreboding.
Then again, benign ALS is not exactly something I would encourage anyone to try. Even in its more sedate configuration ALS is still far from being normal.
That said, I have lost ninty-five pounds. Fifty pounds of which were intentional before being diagnosed with ALS. The other forty-five while wrestling in the ALS WWF division of pillow fighting at night. It is amazing how much energy you can burn just trying to turn over in bed and keep the covers over you.
Extreme weight loss is not a good thing in the world of ALS. Losing weight apparently saps strength. Now that I am closer to my playing weight than I have been in roughly 40 years, I am supposed to return to being “Buddha Bob.”
You just can’t win.
Pelican’s and Amyotrophic Lateral Sclerosis
While sitting in the neurologist’s office during my final session of the day, I noticed a picture of a pelican hanging on the wall. I had often wondered “why a pelican?”
As I stared at the picture, I realized that a pelican’s beak hangs upon its chest drawing its head downward much the same way an ALS patient does when they lose strength in their neck muscles.
Then I began to wonder if the pelican might be the symbol of ALS because of its droopy neck or if it was some sort of inside joke among the physicians to remind them of what they were dealing with. Neither is true, of course, but when you have so much time on your hands your imagination can run wild.
I was explaining to another caregiver how I had noticed that on clinic days, the ALS office looks like a Los Angeles wheelchair traffic jam during rush hour.
Some of the adaptations to the motorized chairs are nothing short of pure genius.
I remember years ago when I grew a beard how I suddenly became aware of how many men had facial hair.
On another occasion, when I started to lose my hair due to stress, I saw more bald men than I ever realized.
To which my caregiver replied, “I know what you mean. When I was trying to get pregnant, it seemed like every woman I saw was going to have a baby.”
Tattoos, on the other hand, have a category all their own.
On this day, the ALS clinic looked like a wheelchair parking lot.
You see everything is relative when dealing with ALS, and for the moment I am simply remembering that “vertical” and “benign” are now two of my favorite words.
About the Author:
Bob Taylor is a veteran writer who has traveled throughout the world. Taylor was an award winning television producer/reporter/anchor before focusing on writing about international events, people and cultures around the globe.
Taylor is founder of The Magellan Travel Club (www.MagellanTravelClub.com)
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