Babbling On About Current Events

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by Rick Jobus |

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“So, round and around and around we go,

Where the world’s headed, nobody knows.

Oh, great googa-mooga, can’t you hear me talking to you?

Just a ball of confusion,

Oh yeah, that’s what the world is today.”

The Temptations song “Ball of Confusion” was released in 1970, following the tumult of the ’60s. Within the lyrics one can find shreds of optimism interspersed among the chaotic and often harsh realities of the day. The depiction is further enhanced by the specter of indifferent and ineffectual government intervention.

One day last month, ALS News Today‘s Daily Digest ran three articles that left me similarly affected. One spoke of a harbinger of potential treatment advancement. Another captured the brutal life that patient and caregiver teams are forced to endure as we await a much-anticipated scientific eureka moment. The final piece discussed the intractability and opaqueness of the regulatory process in this country. As a composite, they are analogous to the spaghetti Western masterpiece “The Good, the Bad and the Ugly.”

The good news sprang from the announcement that Cedars-Sinai Medical Center in California was awarded a $12 million grant to advance its pursuit of a novel treatment to stymie ALS advancement. The new project involves transplanting stem cells that have been genetically reprogrammed to support motor neurons. It builds upon years of promising prior research, and serves to generate a sliver of hope.

The bad news is what’s happening in the meantime. As ALS News Today columnist Kristin Neva points out, even the common cold is uncommonly hazardous when one has ALS. Our reality is that nothing can be taken for granted. Everything is potentially hazardous. There exists no down time, no safe havens, no demilitarized zones, and no sheltering from the storm. There isn’t even a calm before the storm. It’s all stormy weather.

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Looming large in the ALS “ball of confusion” is the potentially ugly role that the regulatory approval process, under the foreboding eye of the U.S. Food and Drug Administration (FDA), may play. As Marta Figueiredo chronicled in ALS News Today, there is contention between the ALS Association and the FDA. The main dispute centers on the agency’s delays in sharing evidence of how it has honored a commitment to “help expedite approval of promising treatments,” according to an ALS Association blog post.

Of particular concern is Amylyx Pharmaceuticals’ investigational therapy AMX0035. A Phase 2/3 clinical trial saw results that “significantly slowed patients’ functional decline,” Figueiredo wrote. While Canada and Europe are working with Amylyx toward approval based on existing data, the FDA is demanding additional testing.

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Taken together, the three aforementioned articles are a stark reminder of just what the ALS “world is today.” The confluence of lottery-like dreams, desperate real life, and inert or oppositional governance can be maddening. The Temptations responded to a similar set of circumstances with the exclamation “great googa mooga,” which is a colloquial, nonsensical version of “goodness gracious.”

The seminal rhythm-and-blues band was not the first to attempt such an intervention. During World War I, one of the founders of the Dada movement, Hugo Ball, introduced what he called “sound poems.” The movement was motivated by the desire to escape what Ball called the “agony and death throes of [the] age.” Under this theme, the poems were reflective of Ball’s attempt to “‘return to the innermost alchemy of the word’ to invent a new language outside of the conventional one,” The Art Story noted.

In biblical times, to halt the Tower of Babel project, the Babylonians’ speech was confounded. In some respects, ALS resembles an unwanted, ugly, giant, impregnable, monolithic tower. Just maybe, if I recite some of the lyrics from “I Zimbra,” the Talking Heads’ adaptation of a Ball poem, my ALS tower will wobble a bit:

“Gadji beri bimba clandridi

Lauli lonni cadori gadjam

A bim beri glassala glandride

E glassala tuffm I zimbra.”

Need I say more?

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Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Comments

Anne Dondanville avatar

Anne Dondanville

Your writing is real and clever and funny. Humor is the highest form of intellect. ALS, well, it won’t and can’t win. You’ve got this. Stay a baby step ahead and YOU will write about the cure.
Truly. Keep the faith.

Reply
Beth Levine avatar

Beth Levine

I'm a big fan of "I Zimbra" and Talking Heads.
Learned something about that song from you.

Reply
Linda Nolan avatar

Linda Nolan

Eloquent as always.😊

Reply
Ravi avatar

Ravi

Hello Rick,
My mother is diagnosed with ALS ("Progressive Bulbar Palsy") 4 weeks back and I have no clue on how to help her. She is having slurred speech and problems with swallowing.
I was wondering whether you can suggest what should I do to prolong my mother's life with good quality of life. I believe you would be the best person to guide me as you are having it for past 14 years.
I also tried to reach out to professors to enroll my mother in clinical trials or stem cell therapy but no one responds back.
Can you please suggest what should I do?

I will really appreciate your guidance.
Thanks

Reply

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