Living with ALS: Understanding the M&Ms of online ALS information
CHARLOTTE, NC: Remember back in the day when people would respond to some off-the-wall statement with a response that went something like, “Well it must be true because I heard it on the radio.”? Today, of course, we hear the same reply only we substitute the words “I read it on the internet.” Which makes me think of the Serpent soliloquy from Back to Methuselah.
All well and good, but if you want to get the straight scoop about something, anything, where do you go these days to get unbiased information?
Take the Trump impeachment story, for example.
Watch CNN for a while, then switch to Fox, it’s a guarantee that it will sound like two completely different stories. For many of us, the tendency is to continue watching the one that best suits our personal beliefs. However, the truth probably lies somewhere in the middle.
We’ve all heard of the popular candy called M&Ms. Just for the sake of my rationale, let’s pretend it was a new product and someone says,
“You should try M&Ms candy. It’s great. Each piece has a little “M” printed on the candy shell. That’s how you know.”
True, there is an “M” on each piece, but if you turn it counter-clockwise 90-degrees, how do you know for sure that it’s not a tiny “E”? Go another quarter turn and it could be a “W”. And finally, one more 90-degree shift and it might even be a small number “3”.
Naturally, everyone knows they are M&MS, but technically they could also potentially be E&Es, W&Ws or even 3&3s. So how can you know for sure?
The other day one of my caregivers showed me a story about Dr. Richard Bedlack, director of Duke University’s ALS clinic in Durham, NC.
Since taking over at Duke, Dr. Bedlack’s work has focused on an avenue of investigation called ALSUntangled which has actually turned up a number of ALS patients whose conditions have improved over time.
Using that as his starting point, Dr. Bedlack decided to establish the ALS Reversals program to better understand ALS reversals and to attempt to make them happen more often. To date, his team has confirmed 42 reversals since the program began in 2015.
One of the ALS reversals was Mike McDuff, a resident of Providence, Rhode Island.
McDuff had been diagnosed with ALS by multiple experts and had lost the ability to speak and swallow. Within six months of taking a supplement called lunasin, a soy product originally intended for lowering cholesterol, McDuff had improved so much that he was speaking normally in a television interview.
At first, I was thrilled, encouraged and hopeful. It had to be true, right? After all I just read it on the internet!
Then I thought about those M&Ms. Was it cynical on my part to step back and reflect with a certain amount of skepticism?
How many times have you known someone who went in for surgery for cancer who said afterward “Yep, they got it all” only to suffer a relapse six or nine months later?
I would truly love to be a front-running optimist but I would rather be realistic than constantly disappointed.
Until someone can show true hard evidence rather than trying to be the first journalist to break a major story about a legitimate ALS breakthrough, I’ll wait until the news spreads like wildfire as it did with Jonas Salk and polio.
THAT’S when I’ll buy in to the ALS reversal bandwagon.
Association of Professional Ball Players of America in Arizona reaches out . . to me
One afternoon I had a phone call from the Association of Professional Ball Players of America in Arizona.
As a lifetime member, they had been provided with grants from a medical organization in Chicago to do a clinical study using stem cells. If I wanted to participate, my only out-of-pocket expense would be to get to the Windy City for an initial evaluation.
At first, I was thrilled at the possibilities, but after a lengthy discussion with my neurologist, who is one of the leading doctors in the country in the study of ALS, I determined that for me the exercise would very much replicate Don Quixote’s quest to battle windmills.
I rejected the offer.
Choosing reality over miracles
Too often people spend what time they have remaining spinning their wheels like a car stuck in the snow in search of the panacea that is a medical miracle.
One creative avenue that Dr. Bedlack is looking at involves filtering spinal fluid. Studies have indicated that the spinal fluid of those with ALS contains pro-inflammatory substances. One medical technology company Minnetro has developed a device that filters blood from spinal fluid.
Dr. Bedlack hopes that if the device can remove the microscopic toxins present in the spinal fluid of those with ALS, therapeutic benefits may follow. If he is successful, he intends to seek approval for a small pilot trial in 2020.
That seems to me to be a more viable option for ALS patients than stem cells. At least for the immediate future.
Then again, with such small sample sizes and the overwhelming desire for a breakthrough, just how exactly can someone evaluate individual studies to find the strongest course of action?
Do you believe CNN or Fox?
Dr. Bedlack’s answer is “(There is) no need to think outside the box, simply realize there is no box.”
As the serpent in George Bernard Shaw’s play Back to Methuselah said: “You see things; and you say, ‘Why?’ But I dream things that never were; and I say, ‘Why not?’”
As for a cure for ALS? Why not? Just keep it real.
Lead Image: Photo by Jan Kopřiva from Pexels – https://www.pexels.com/photo/photo-of-a-snake-3280908/
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 the founder of The Magellan Travel Club (www.MagellanTravelClub.com)
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