The Placebo Effect of Fighting ALS
“I’m afraid you have amyotrophic lateral sclerosis.” My neurologist continued, “Anyone can get it, even myself,” and like Charlie Brown in the classroom, I shut him off completely, reducing his vocal output to a series of horn mutes.
I then went home and googled ALS. Devastated by what I found, I leapfrogged the first three stages of the Kübler-Ross grief cycle and found myself simultaneously consumed by depression and acceptance. And, at that moment, acceptance metastasized into giving up.
Thankfully, I had a second-opinion appointment. As I was no longer in a “Charlie Brown in the classroom mode,” I was able to interact productively. I learned of the systemic research underway and some disease intervention attempts by other ALS patients. Perhaps there was a way to fight.
The war may be fought by employing two strategies. The macro strategy seeks to benefit the entire population of people with ALS. The battle also may be waged at the micro level, aiming to slow the beast for the individual patient.
The best way to simultaneously impact both the macro and micro fronts is through clinical study participation. There may be no more profound contribution to neutralizing ALS than by demonstrating the safety and efficacy of a therapeutic treatment.
Recruitment for one or more trials is happening all the time. In fact, researchers lament the slowness of enrolling the required participants. Both the ALS Therapy Development Institute and the ALS Association provide a comprehensive listing of open trials. By participating, you will be helping to advance the science necessary to arrest ALS, and for the duration of the study, you will receive state-of-the-art attention.
Of course, the macro attack is fueled by funding. Donate if you can. Take part in fundraisers, if you are able. Both serve to push the needle our way. Plus, you will enjoy the mutual benefit from interaction with similarly circumstanced people. We are not alone.
Victory at the macro level will require navigating the regulatory “chutes and ladders” path. Although well-intended, the rigor demanded before the approval of a new therapy puts anticipated availability beyond our ALS-altered life expectancy. Legislative initiatives like the “right to try” bill and concepts such as “international drug reciprocity” need to be aggressively enacted.
Right to try would give terminally ill patients the right to seek treatments that remain in clinical trials but have passed the safety phase of the Food and Drug Administration’s approval process. Reciprocity would allow treatments that have been approved in Europe or in other developed countries (such as Japan) to be approved for, and to made available to, patients in the United States. Communicate with your elected officials to demand that they adopt a time-is-of-the-essence mentality, and prioritize any measures enabling terminally ill patients to access treatments of promise in an accelerated manner.
What can one do from a micro perspective? Be ever curious and open-minded. There is no scientifically published way to halt ALS, and some folks have resorted to “off-the-beaten-path” treatment methodologies. Although the evidence is anecdotal, it’s often superficially compelling. The trick becomes how to parse the sincere from the exploitive and the beneficial from the ineffective, or worse yet, harmful.
ALS Untangled is a good place to start. It is a compendium of many of the interventions purported to have yielded positive outcomes, some of which have been scientifically reviewed. ALS Worldwide is also a useful resource. Patients Like Me offers a ready population of people with ALS to query and compare notes with.
I have relied on those three sources, and some other trusted subject-matter inputs, as I’ve attempted my own anti-ALS “cocktail” of treatments. Coincidentally or not, some were accompanied by symptoms improvement and/or periodic condition plateauing. I have also experienced some measure of stability during clinical trial participation, fundraising efforts, and when pushing for therapy approval regulatory overhaul. In short, any time that I fight.
From my second-opinion appointment to the present day, I have fought. Sure, I get angry, particularly as a new symptom manifests itself. Occasionally I experience a brief wave of depression. But mostly I fight. I believe that it has added days to my life, and life to my days.