Could Thinking Outside the Box Lead to a Cure for ALS?

Could Thinking Outside the Box Lead to a Cure for ALS?

Shortly after emerging from the stupor that culminated in my ALS diagnosis, I was consumed with a zeal to learn all that I could about the millstone dangling heavily from my neck. Toward that end, I read everything I could lay my eyes upon, though some material was light-years over my head. I was insufferable with my endless list of questions for my care team, and my participation in all ALS-related webinars was unflagging.

Eventually, I reached a supersaturation state with respect to data intake capacity, the tiresomely exacting approach to disease arrest, and my fanaticism with the command of subject matter. As a result, I backed off my frenetic effort to take in every nuanced aspect of ALS-related current events. For example, I now only sit in on webinars if the content piques my curiosity and my mood dictates it.  

Last week, both factors registered in the affirmative, so I participated in the webinar “Postcards from the Edge: Updates on Six Unusual ALS Projects.” I thought the title hinted at something different. Organized by the Northeast ALS Consortium, it featured Dr. Richard Bedlack, director of Duke University’s ALS clinic. The event did not disappoint.

The webinar began with a description of the ALS Clinical Research Learning Institute. The genesis for the clinic was the relatively poor enrollment rate observed for ALS clinical studies. Initially modeled after a similar effort for Parkinson’s disease, its mission is to empower attendees to be advocates for ALS clinical research. Once “graduated,” the hope is that each ALS Research Ambassador will become more active in the effort to find a cure for ALS.

Join our ALS forums: an online community especially for patients with Amyotrophic Lateral Sclerosis.

In the webinar, Dr. Bedlack gave an update on ALSUntangled, a program for the tabulation, prioritization, and review of alternative and off-label ALS treatments. Composed of more than 120 expert reviewers from 11 countries, the program is a deep dive into the safety and efficacy of the suggested interventions. To date, 50 reviews have been published, with another 400 treatments nominated. While no breakthrough has been confirmed, the initiative provides an excellent resource for anyone interested in alternative therapies for ALS.

Who knows? A self-healing approach may even lead to an infinitesimally rare ALS reversal. In the webinar, Dr. Bedlack stated that he had examined 43 authenticated cases of regained “significant” or “complete” motor function in those who had previously received an ALS diagnosis. Dr. Bedlack explained how, in conjunction with CReATe (the Clinical Research in ALS and Related Disorders for Therapeutic Development Consortium), a team from Duke University would be exploring the genetics of those with ALS reversal. Under the same program, titled “Study of ALS Reversals,” microbiome and environmental exposures also will be studied.

In advance of that scientific analysis, a cursory comparison of the reversal population offered an interesting similarity. Three had taken curcumin, a compound in the spice turmeric, as well as other supplements. Curcumin also hypothetically is a mechanism of action against four theorized causes of ALS. As a result, Dr. Bedlack is directing a curcumin study in the hope that the knowledge gained might inform a treatment that could replicate the reversals.

Dr. Bedlack intends to explore two other novel treatment concepts. One involves clenbuterol, a beta agonist approved outside the U.S. for asthma. It is also known as a banned substance for athletes due to its performance-enhancing effects. A small study of clenbuterol for ALS published in 2006 showed encouraging results, including over 20 percent improvement in manual muscle tests.

Another 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. The medical technology company Minnetronix 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 benefit may follow. If he is successful with his proof of concept, he intends to seek approval for a small pilot trial in 2020.

The webinar closed with a slide stating, “No need to think outside the box, simply realize there is no box.” That’s refreshingly welcome thinking in the steadily shrinking box that ALS can often feel like for those of us with the disease.

Or, as the serpent in George Bernard Shaw’s play “Back to Methuselahsaid: “You see things; and you say, ‘Why?’ But I dream things that never were; and I say, ‘Why not?’”

A cure for ALS? Why not?

***

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 Services, and are intended to spark discussion about issues pertaining to ALS.

24 comments

  1. Cindy says:

    Thanks. I had I intended to sit in on that webinar but something came up. For each of us our personal reversal lies in finding the proverbial needle in the haystack. Some will be in traditional medicine. Some in alternative treatments. And some in a heavenly miracle.

  2. Bill says:

    Good webinar. For the curcumin Dr Bedlack will study, its an easy one to start yourself. I’ve been taking curcumin for a year but just switched to a Theracurmin 90 mg twice a day like one that he will run a trial with. Pretty affordable, safe and easy to try. Without trial data won’t know if it’s helping but hopefully trial will give us data.

  3. Dave Reckonin says:

    Doc Bedlack is a smart cookie, and he does look all around the box not just inside it.
    Charlatans were touting Lunasin as a miracle treatment for ALS, and it was found to be highly effective – effective, that is, in the sense of making profits for the owners of this carpet-dust tablet.

    The Good Doc initiated a scientific study of Lunasin which soon found it non-efficacious. Profits shrank significantly but not before the owners became their bank manager’s favorite client.

    Curcumin/Turmeric was once one of the most expensive spices in the world. Now it is very inexpensive but as well as making a really nice curry dinner, another of its attributes is as an anti-inflammatory agent. Inflammation of neurons in ALS is well known and it is entirely possible that Curcumin would have a slightly ameliorating effect but likely not so much as an effective treatment. Dagmar would likely agree that keeping positive might possibly include having regular intakes of Curry and Coors and feeling happier for it. Bon appetit.

  4. Dave Reckonin says:

    The thing/reality about ‘reversals’ is that sooner or later you realize that
    i) something was misdiagnosed, or
    ii) a product is being marketed.

  5. Diane Fergot says:

    Thank you for this excellent summary of Dr. Bedlack’s hope-filled webinar. He is a pioneer and explorer on so many fronts in his efforts to ultimately slay the ALS dragon. Hopefully your wonderful recap will encourage people to go on the NEALS website and check out the archived version of “Postcards from the Edge”!!!

  6. Kenneth Jones says:

    My wife was diagnosed with ALS March of 2018 after almost 9 months of testing by neurologists. Half way through 2017 my beautiful active healthy wife was told by MUSC in South Carolina that she had ALS. We both went into a freefall with emotions. She was immediately thrown some hope by a treatment that was previously approved for use in the USA, Radicava in 2017. For the next 16 months she had home monthly infusions. Sadly I watched my wife be taken away from me a little bit everyday and she finally succumbed to this horrible disease in June of this year.
    I read ALS information weekly and recognize we as one of the most powerful richest nations in the world have not contributed much in the way of any drug treatments for ALS. My understanding is the only two FDA approved drugs for ALS treatment are Riluzole and Radicava and both were both developed in Japan. (Riluzole in 1995). This is borderline ridiculous.
    I am glad that some much needed attention is now being addressed by your ALS News. I read above article and have some input. My wife and I were both taking Turmeric Curcumin daily for several years prior to her diagnosis. A Nurse Practitioner had recommended this supplement for our arthritis after we both had total knee replacements about 10 years ago. My only caution to others looking for the Golden Fleece do so with the help of their doctors and inform them of all drugs including supplements that you are taking.
    And hopefully soon the USA will start a serious campaign which addresses some of these life killing diseases.

    • Jane says:

      My daughter was recently diagnosed with ALS after 15 mos of being shoved around from doctor to doctor, who could care less. Now she has been told she has ALS, then after that several months later the same doctor said maybe you have PLS, not sure which is worse but to me it seems like not much time spent on finding out what really is wrong with her. Given no hope, told we can LOAN you equipment you will need but when you die it needs to be returned. Go home and learn to die gracefully. That was it. We have been doing our own research on supplements etc, but the thing is if you read up on these some say take this, others say take that, you would end up with 20 plus pills/supplements pr day and at your own expense. I would hope that the homeopathic community would ban together and put out a diet etc that they believe in and give people the option to follow it or not. But there is nothing. So the medical or homeopathic doctors seem to ignore ALS. I am surprised at the homeopathic community for not working together but guess they make enough money just working on their own while these people looking for hope cannot find it anywhere. It is disgusting in this time not one new drug in 25 yrs. That tells me money is more important that a life.

  7. Dave Reckonin says:

    Big Pharma rarely has a monetary problem in funding development of a treatment. Thing is, Big Pharma does not want to cure anyone. It wants to sell treatments which control a condition, ad infinitum.
    A cure is Bi Pharma’s biggest nightmare, as it rules out a profit stream and profit-centre, for good.
    A cure will someday come from the research labs which, for ALS, are chronically under-funded. More public money is raised for, say, Cancer Research in one year, than has been raised for ALS throughout its entire history.
    It’s easy to identify the main two problems but less easy to solve them.
    Radicava is only modestly effective and then only for pALS who have had symptoms for less than 15 months. MT Pharma are very happy to also sell it to pALS whom it knows darn well will not benefit from it, and Healthcare Authorities are brow-beaten into offering it because the pALSs community cries out in heartbreaking despair, on the basis of ‘Something! Anything! Please ! ‘
    My condolences to you Ken; I too lost my wife to this horrific brutal murderer called ALS.

  8. Richard Osness Reinsvold, M.D. says:

    I met Richard Bedlack once when I was a fellow in neuromuscular medicine working with and learning from Dr. Stan Appel and his team. I have a lot of respect for both as both are absolutely brilliant and incredibly dedicated to helping us with this ALS problem. I have been focused on this disease since the onset of my first symptom. As a young neurologist I chose this path of extra study for personal reasons. I’ve done my best to be the most knowledgeable I can be on this topic, but Bedlock and Appel continue to impress and be at the leading edge of research. There is so much that they know and understand that is not yet published. Of all the researchers in ALS, these two are my favorite. If we find a cure it will either be them or their students. In my time with Stan I learned the most important lesson of this degenerative state…the focus of life with ALS and therefore treatment must be on quality of life. As with everyone on this planet, the quantity of life is most certainly an uncertain thing. My focus since my own diagnosis has been on the quality of life. For me and my family that has made all the difference in the world.

    • Michelle Osuski says:

      Thank you to all who are trying to find cause or cure for this disease. There may be hope for my my family in the future but none for those of us now.

  9. Thank you Rick, for this excellent synopsis of Dr. Bedlack’s webinar. Would you please clarify what you mean by ” four theorized causes of ALS” – Here is the excerpt from your article: Curcumin also hypothetically is a mechanism of action against four theorized causes of ALS…
    I would greatly appreciate your response.
    Thank you kindly,
    Juliet Pierce, RN

    • Rick Jobus says:

      modulation of neuroinflammation,
      reduction of oxidative stress,
      amelioration of protein aggregation, and
      alteration of the fecal microbiome.

  10. WIsdomAndReasonMike says:

    So many billionaires out there, ready to buy another island or get another check for millions of dollars by being shady.
    Please if you have the opportunity write some of this people and ask to fund ALS research. If we stay silent or speak very little we will never truly get a cure or a treatment to just live and be a life sentence instead of a Death Sentence.

    • Jane says:

      I have written Oprah, and several others no responses from any of them. My daughter now has an appointment with Dr. Bedlack after a six month wait. That was after a doctor friend called and asked for a favor to get her in. NOt sure it helped or if her name just happened to come up. I say apply at every single large hospital and take the first one that answers, She applied at Mass General, and several others and no word yet. No trials going on, NOTHING much happening except I get a lot more emails asking for money. I also wrote the Surgeon General twice, no reply, waiting to see on the second one but I am sure it is in the garbage. Now our vets are returning with this horrible disease, this after putting their lives on the line for us they come home and are told oh well thanks for doing that but now just wait to die from ALS that is the thanks we have to offer you. This entire treatment of ALS is a disgrace. We all know it is about the money and our Congress people tied to it. Follow the mooney and you will know why there is no cure.

  11. Dave Reckonin says:

    “There is so much that they know and understand that is not yet published.”
    I wonder why it isn’t published?
    Are they onto something good ?
    Is it more symptom identification?
    Is it Intellectual Property?

    You have peaked my interest and probably that of many others.
    I’m surprised that Doc Bedlack had time to spend on something like Lunasin which had more of a look of Marketing Project than making pALS conditions much better.

  12. Dave Reckonin says:

    From his website: “Research in Dr. Appel’s laboratory has focused on developing new insights into neurodegenerative diseases with primary emphasis on ALS. His studies of mutant SOD transgenic mice have documented that neuroinflammation and activated microglia are neuroprotective during early stages of disease and cytotoxic during late stages of disease. The early stages start within motor neurons and appear cell-autonomous, whereas later stages involve innate immune glia and are non-cell autonomous.These two stages appear to be modulated by peripheral Tcells that enter the CNS at sites of neuronal injury; Th2 and regulatory Tcells are increased in early stages and appear to provide neuroprotection, while Th1 Tcells are increased in later stages and mediate cytotoxicity. Transplantation of ALS mice with regulatory Tcells prolonged disease duration by more than 80%. Our comparable studies in human ALS have employed PCR techniques to confirm the presence of activated microglia and to demonstrate the presence of CD4 Tcells as well as immature and mature dendritic cells and enhanced chemokine signaling. Our laboratory was the first to document that regulatory T lymphocytes modulate disease progression in ALS patients. More specifically, regulatory T lymphocytes are decreased in ALS patients that progress at a faster rate; the levels of Treg may thus serve as a biomarker of rates of disease progression. His current efforts are focused on enhancing the protective immunity of Treg cells and anti-inflammatory microglia, and decreasing the proinflammatory immunity of Th1 effector lymphocytes and proinflammatory microglia.”

    A smart cookie and fine investigatory work. A lot of the above describes symptom identification and progression states.

    He’s seeking a treatment , not a cure. Until he/whomever finds a cause, a cure is not on the cards, but I guess he’s the best we’ve got.

  13. Rick W. says:

    Hi, I’ve been having slowly progressing muscle weakness, loss of grip strength, SOB, and many other symptoms over the last several years. A swallowing study showed a protruding pharyngeus muscle. I had and have trouble and pain now swallowing things like capsules or applesauce, as in the test. I thought early on that I had just autoimmune problems and did in fact test positive for ANAs, dsDNA, ssDNA,and ACA antibodies, but my symptoms kept worsening. I now have fasciculations in the hands and top of the legs, spasticity in the calves and feet and a sore, stiff neck 100% of the time. I will be getting the EMG and NCV tests in November. I’m scared and don’t know what to do. I have not been diagnosed with anything after seeing roughly 30 doctors in the last 4.5 years. I’ve had signs of MS as well signs more indicative of ALS over the last couple of years. Much of my frustration has come from doctors not believing me or doing much of anything about it until very recently. I’m tired and weak all the time now and can’t sustain much muscular effort, my hands hurt just from typing this, so something must be wrong. I have pain in my right shoulder joint that was dislocated from a fall and pain in the adjoining biceps. I can barely raise my right arm and it hurts more the higher I raise it. I find myself using my left hand more and to help my right hand. Does any of this sound familiar? Thanks for any insights or suggestions,
    Rick
    Rick

    • Mary Frame says:

      Please give the list again of the six things that have helped people overcome ALS. Also, please
      give more detailed information about the brands and dosage of the
      meds that can be purchased without a medical prescription- especially the curcurmin !!

  14. Ann says:

    Have you looked at http://www.healingals.org – this is outside the box – but some reversals. The story of Nelda Buss – who came back from the brink through a faith/energy healer – she is still around but all her caregivers are since passed. She has a book in kindle “can you walk yet. Maybe we just need some faith. At the core we are all energy, so it has to be an energy dysfunction. Most research unfortunately are looking for an allopathic solution, so bigfarma can benefit from it. My husband is getting very weak and can’t breath, but I will never stop looking at the alternatives, because if I could reverse his disease with bananas, you would never be told that as it isn’t profitable – what a crazy world we now live in LOL

Leave a Comment

Your email address will not be published. Required fields are marked *