My New Year’s Resolution Is to Remember There’s a Rainbow

My New Year’s Resolution Is to Remember There’s a Rainbow
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“There’s nothing but twigs and seeds, twigs and seeds,

And they sure don’t deliver the punch that this ole head needs.”

Jesse Winchester is lamenting his discovery that all that remains in his “medicinal” stash are the ineffectual parts of the marijuana plant. 

An analogous experience occurs many times over for anyone afflicted with ALS. We don’t ever receive what our old heads need. And it’s not for lack of effort, willingness, or hope. It is because to date, our options amount to garden detritus.

We have an engaged research community. Annually, there are always multiple promising treatment protocols that our community fanatically tracks. Despite ever-resilient hope, like in Winchester’s song, at the end of the year our figurative Christmas stockings contain lumps of coal.

In my case, the more I become personally involved in a failed new therapy initiative, the more bitter the pill of disappointment becomes. For example, in 2015, Genervon, a clinical-stage biopharmaceutical company, reported encouraging results for an ALS drug candidate. Motivated by its breakthrough potential, I undertook a lobbying effort aimed at accelerating approval by the U.S. Food and Drug Administration. When development for that drug stalled, I was doubly deflated.

Worse yet was my participation in a clinical trial that was aborted midstream due to “futility.” Based on the extremely positive outcome of a small study in Italy, a larger lithium trial was initiated in the United States and Canada. Despite the prospect of committing to 10 round-trip treks of 400 miles, I enthusiastically enrolled. 

Accompanying the news of the study’s termination came stern instructions to dispose of the remaining test capsules. Hoping to capture any kind of Italian magic — and knowing it may have been a placebo, or worse yet, harmful — I didn’t comply and stuck to the dosing schedule. Alas, like the trial itself, the effort was utterly futile. My resulting depression was palpable.

It wasn’t the only time I heaved caution to the wind during my ALS existence. If my noted comparisons with fellow sufferers are indicative, ALS has caused a widespread, seismic shift in people’s risk versus reward outlook. So much so that scammers take note.

P. T. Barnum may have believed that “there’s a sucker born every minute.” No matter someone’s innate gullibility, the intrusion of an incurable, terminal disease will magnify it. We need to believe that the heretofore impossible can happen. By far, the category of “twigs and seeds” findings that most draws my ire is when a snake oil purveyor masquerades the impotent as omnipotent.

Despite imparted logic and common sense, I desperately want to experience lightning in a bottle where ALS is concerned. That makes me a target. Had my financial wherewithal allowed, I am almost certain I would have jetted out of the country for “miracle”-laced stem cell treatments, packing the therapeutic punch of ground bat wings.

Instead, and against my better judgment, I opted for an all-fruit diet. The “science” behind it was that eating only fruit would awaken the lymphatic system out of hibernation. I watched a video asserting that the resulting toxin elimination would allow the body to reverse ALS via cellular regeneration.

With the hook set, I opted for a three-month supply of the proponent’s “unparalleled” tissue-specific, herbal formulas. My prize was weight loss, messy bowel unpredictability, and self-consternation.

I hope that my fruitopian quest makes me immune to future fantastical overtures. The adage “fool me once, shame on you; fool me twice, shame on me” serves as an apt reminder. Still, there are times when the temptation to lower the guard rail creeps in.

From time to time, a comment will be posted in response to one of my columns, extolling a little-known, yet fully efficacious, treatment for ALS. The referrals are easily identified as fraudulent. Per the site ALS Forums, online con artists numbering in the thousands “will post product reviews directly in discussion groups, online forums and in blog posts.” The approach invariably contains one or more telltale signs of their swindling intent. 

Knowing this, I am amazed at what optimism these claims continue to engender within me. Whether it’s legitimate laboratory output, or the byproduct of suspicious tree bark, the mere mention of progress against ALS kicks my hopes into overdrive. Sadly, I have yet to develop a callus to shield myself from the pain of every such bubble bursting.

“Wrong End of the Rainbow” is a song by Tom Rush. The words imply a “correct” end, like a figurative pot of gold. I may be stuck at the “twigs and seeds” side for now, but I’ll cling to my rainbow, faithful that I will emerge healed, at the right end, in this life or the one to come.

***

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.

Rick is a 62-year-old man who was diagnosed with ALS in January 2007. Currently a resident of Southwest Florida, he has lived in four other metropolitan areas, but greater Chicagoland will always be “home.” Rick is a degreed engineer, spending his career in the medical device industry. He’s had the good fortune of extensive travel throughout the United States, Europe, Asia, and the Caribbean. He writes, in part, to be an ALS advocate. Additionally, it is his hope that his output will help dispel the myth that technical folk and digestible prose aren’t mutually exclusive.
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Rick is a 62-year-old man who was diagnosed with ALS in January 2007. Currently a resident of Southwest Florida, he has lived in four other metropolitan areas, but greater Chicagoland will always be “home.” Rick is a degreed engineer, spending his career in the medical device industry. He’s had the good fortune of extensive travel throughout the United States, Europe, Asia, and the Caribbean. He writes, in part, to be an ALS advocate. Additionally, it is his hope that his output will help dispel the myth that technical folk and digestible prose aren’t mutually exclusive.
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3 comments

  1. As long as the individuals and organizations leading the fight for a cure for ALS pat themselves on their own backs for what is clearly poor performance, people with ALS lose confidence that these organizations are putting the patient’s best interest first and we will continue to cling to rainbows, faithful that we’ll emerge healed.

    Organizations advocating the fight for a cure flattering themselves for failure is evident by the ALS Association ([email protected]) touting their success in their 4 year effort to work with the House of Representatives in passing the ALS Disability Insurance Access Act. I wouldn’t be very proud of the fact that it took 4 years to pass. Rather, I’d be embarrassed! Below is a quote from their email:

    “Over the last four years, YOU have helped build the momentum and support for this bill. From a single sponsor when it was originally introduced in 2016…”

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