CHARLOTTE, NC: One of the aspects of ALS that eventually zaps most of its victims is dysarthria, which is losing the ability to speak. Which is a half-filled glasses situation. At the moment, I still have yet to go full Monty voice-wise but it may not be long. Right now I just sound like Bluebeard the pirate which means the biggest word in my vocabulary is, “Aarrrgh”, which simply means that I’m clearing my throat.
Dysarthria feels like having a bad case of laryngitis and a lazy tongue that is two steps behind what my mind wants to say.
For a brief time, the condition was a blessing at first. Having spam callers hear my raspy “Har-row” (translation “Hello”) when I answered the phone and then hang up on me was a huge personal victory. (That’s my ALS half-filled glasses tip for the day. You’re welcome.)
However, long, in-person conversations with friends became tiring, and I knew that even though they nodded politely, they weren’t always understanding me.
In general, losing my voice isn’t that big of a deal for me, other than the slow response time and the seemingly endless lag time between words when using audio technology.
For the moment I am using a microphone device that amplifies my voice during conversations into semi-coherent muffles rather than incomprehensible mumbles.
The equipment has a small wireless amplifier that can sit on a table or be hand-held for speaking with small groups.
For my part, I wear a microphone around my neck that is quite similar to what entertainers use these days during concerts. By the way, my double-pointed dunce cap bra is on backorder, and when that arrives my ensemble will be complete.
Being open to adapting to ALS
Always being open to new ideas with a willingness to adapt is key to living better while living with ALS. For example, last week a longtime friend (she would hate the term “old friend” even though, like me, she’s ancient) sent me a marvelous little video which is a twist on the familiar adage about a glass being “half full” or half empty.”
The demonstration features presumably a science class where a teacher fills a medium-sized jar with golf balls. Then the instructor asks, “Is this jar full?”
“Yes,” comes the response from the students.
Then the lecturer brings out some small glass marbles and adds them to the bottle of golf balls. “Is it full now?” he asks again.
“Yes,” reply the students.
Once more the teacher returns to his bag before he pours sand into the jar.
Once filled, he looks at the class and repeats his question, “And how about now? Is the jar full now?”
Again the answer is “yes” though many of the youngsters are now smiling at what they have just witnessed.
Finally, the instructor opens a bottle of beer and pours the liquid into the jar. When the professor is finished he says:
“Now I want you to recognize that this jar represents your life. The golf balls are the important things; your family, your friends, your health and your passions. The pebbles are the other important things; your car, your job, your home. The sand is everything else. It’s just the small stuff. Now if you put the sand in the jar first, you won’t have room for the pebbles or the golf balls. The same is true in life. If you spend all your energy and your time on the small stuff, you won’t have time for all the really important things that matter to you. Pay attention to the things that are critical to your happiness. Take care of the golf balls first, the really important things. Set your priorities because everything else is just sand.”
At that moment a student in the middle of the asks what the beers represent.
“I’m glad you asked,” answers the teacher, “It goes to show that no matter how full your life may be, there’s always time for a couple of beers with a friend.”
Thus endeth our ALS lesson for the day.
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