Battling ALS : A battery of tests and paperwork
CHARLOTTE, NC, February 7, 2017 – There was a time when I enjoyed traveling in continents. With the onset of ALS, I find that these days I travel with incontinence.
Last week was an eye-opener. I was scheduled to see yet another doctor at 10 a.m. on Friday. By 3:30 p.m. I was finally on my way home. Talk about thorough.
At one point in the process, a nurse came in and took so many vials (or should I say “viles”) of blood that I thought Donald Trump was “draining the swamp.” Later, when I saw the list of things they were testing for, I was amazed she didn’t take more samples.
The initial portion of the visit, which lasted about 2 hours, involved detailing my medical history from the time I was an embryo.
It then progressed into testing to see if my brain was still functioning.
“OK, I want you to count backward from 100 by 7 and go as far back as you can,” said the nurse.
“I couldn’t do that when I was taking the SATs,” I thought, “how am I going to do it now?”
“Next I’m going to say five words and I want you to repeat them back to me,” she said. “Face. Velvet. Church. Daisy. Red. Now you try.”
“Face. Velvet. Church. Daisy. Red,” I answered. “So far so good.”
We played some more games where I had to say groups of three numbers in reverse order to what she said.
Then she asked me to take a deep breath and count out loud to 100 as high as I could go before fainting. I managed to get to 64.
“Let’s try another one,” said Nurse Lindsey. “Say the alphabet and then the corresponding number. For example, A, 1, then B, 2 and so on.”
“Finally something easy,” I said to myself. Easy, that is until I forgot which letter came after “G” which also sent my numbers off, causing me to start over.
“Very good,” Lindsey answered, which told me nothing. “OK, now we’re going to do a little time test. I want you to say as many words as you can in one minute that begin with the letter “F.”
Now THAT was a dangerous assignment. Any letter other than “F” would have been simple, but keeping myself from dropping a few “F-bombs” while trying not to think of words that begin with “Ph” was a nightmare.
“Friend. Full. Funny. Feel. Fellow. Fine. Folks. Few. Free. Fancy. Flip. Flip Flop. Fragrant. Fast. Furious. Fellowship. Floppy. Fasten. Fake. Four. Five. Forever. Fluid. Flan. Flank.”
“Stop,” said the nurse. “Great you should have done about 11 and you got 25.”
“Yeah, but how times did I think of “phony,” “phone” and “photo?” All of those slowed me down,” I thought.
Then came the kicker. “Can you say the five words I asked you to repeat?” asked Lindsey.
“What?” I responded incredulously. “I’ve been counting backward by 7 from 100, saying every “F-word” in the dictionary except the big Kahuna and repeating numbers in reverse order for 20 minutes and now you want me to list five words you had me repeat a half hour ago.”
“Yep,” said Lindsey matter of factly. “Can you do it.”
“Face. Velvet. Church. Daisy. Red,” I said in rather rapidly to the extent that I think even Lindsey was taken aback.
Next, I did a six-minute walking test up and down the hallway between two orange cones. It felt like a human time trial test for a NASCAR race, but I did about 12 or 13 laps before the clock ran out.
Soon afterward, the doctor came in and the next four and half hours belonged to him.
During the doctor’s session, I had to repeat the word “tickle” as fast as I could as well and the word “pepper.”
I did a breathing test in which I had to suck in air as quickly as possible creating a picture in my brain of being impaled by a flying breathing tube to the back of my throat.
Exhaling was worse, however.
“Guess you were concerned when he turned bright red?,” said the doctor to my wife. “Not to worry. No danger.”
Meanwhile, the patient wasn’t so sure and felt rather despondent when the third and final trial failed, leaving us to do a yet another trial.
From there we went on to flipping my hands over as quickly as possible making me feel like a freshly caught flounder laying on the hot deck of a boat.
At the end of the day, it seemed like it took another hour to print out all the notes from the ordeal. Actually, it was only about 15 or 20 minutes before I was on my way back home and constantly repeating in my head, “Face. Velvet. Church. Daisy. Red.”
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Bob Taylor has been traveling the world for more than 30 years as a writer and award winning television producer focusing on international events, people and cultures around the globe.
Taylor is founder of The Magellan Travel Club (www.MagellanTravelClub.com)
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Help Bob in his battle against ALS through his GoFundMe account. Thank you.