CHARLOTTE, NC: One of the necessary evils of living with ALS is a Catch 22 situation that its victims know all too well as “the clinic.” Clinics take place every three months; four times a year. On clinic days it seems as though every disabled person within a 50 radius of the facility wheels their way into the lobby.
The purpose is to allow patients the opportunity to see each of their doctors at one time so they are not spinning their wheels with endless appointments until the cycle renews. It’s a great time saver and a win-win for everyone, but when clinic day rolls around it’s guaranteed to be a marathon visit that takes all day.
Clinic days do have a reunion sensation about them as people with the commonality of being linked by ALS catch up on each other’s progress and share information that would drive non-victims into convulsions at listening to the unrelatable subject matter.
It’s an odd situation, however, because, despite the comradeship, there’s still a mad dash mentality to complete the required interviews with each specialist as quickly as possible so patients can return to their now normal abnormal routines.
During my last clinic, while adjusting my power wheelchair, one of the technicians mentioned something in passing that has since re-energized a small but significant aspect of my constantly changing lifestyle when she mentioned a portable microphone to aid with communication.
One of the many facets of ALS is a gradual weakening of the voice which ultimately evolves into the loss of the ability to speak.
The first reaction is to consider the idea of learning sign language, however, that option is akin to losing electrical power and then flipping a light switch. Go ahead and laugh because we’ve all done it and more than once.
Signing with ALS is a useless exercise if you no longer have use of your hands and arms.
According to the speech-pathologist at the clinic, the pitch of my voice is in the lower range and I am now speaking in a typical ALS monotone. My voice was at the same frequency as the low hum of many home appliances, and the human ear is less sensitive to low sounds at low volumes.
Translation: Human conversation was diminishing but, if desired, I could now have a very nice chat with my refrigerator. Now there’s some food for thought.
Once more into the realm of adaptation. The pathologist recommended I turn up the volume of my voice by using a ‘personal amplification device’ (PAD). Sidebar question, why can’t we just say ‘microphone’? Does everything with ALS need to be just a little bit more complicated?
Needless to say, we placed an order for the PAD and, when it arrived, naturally the first thing to do was to run some tests.
The headset resembles the mikes worn by musicians, entertainers and actors while the microphone itself which plugs into a small speaker that is about 3 inches wide, 4 inches high and 2 inches thick can sit on a table or clip on to a belt.
For the next few days, I used my portable microphone in a few voice-challenging situations at home. First, my wife went into another room to confirm that she could hear me.
Next came the all-important television test. Victory! Football games, movies, and news no longer drowned me out.
The ultimate success happened when I directed our Amazon Echo to tell us the weather forecast, turn up the volume and stop.
Nighttime, however, is still a problem because while the microphone is charging, Alexa must interpret my mumbles through the garbled muffled tones of a facemask attached to my trilogy machine which is somewhat like a CPAP on steroids.
The final challenge came at a crowded restaurant with several friends at our table and lots of milling about and ambient sound amid the din of a noisy environment.
With my headset on and volume up, I discovered surprisingly that I could speak softly into the mike and others could hear me. Having dinner with 10 people, I could speak clearly with everyone, including the folks at the far end of the table.
With all of that said, the PAD is not a 100% percent panacea. For example, the volume doesn’t improve my speech; it only makes it louder. I still have to pay attention to my pronunciation.
There’s also basic microphone etiquette, and this is critical. I must remember to turn it off before coughing, laughing out loud, letting loose a big yawn or before using the restroom. I’ll spare you the details of those hard-learned lessons.
Who knows what and where the next ALS challenge will be but stay tuned because it’s looming and we’re already preparing for the next battle. But you will be able to hear me warn you it’s coming.
About the Author:
Bob Taylor is a veteran writer who has traveled throughout the world. Taylor is 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)
Editors Note: Support Bob’s GoFundMe to give him a hand up