I’ll Have What She’s Having: ‘ALS Reversals’ Share Good Advice
We all know there’s no cure for the common cold. But let it be known that you have a cold, and suddenly everyone’s an expert. They’ll share advice, home remedies, and their own versions of a cure.
It’s the same in the ALS community, where our holy grail is also finding a cure, or at least a way to slow down or stop the steady progression of our symptoms.
Recently, I watched the livestream of a conference about ALS that featured eight people who called themselves “ALS reversals.” They earned their status because each had been diagnosed with ALS, and over time their symptoms were halted. Some had been symptom-free for more than 20 years!
To me, reversal is a misnomer. A few still limped, some spoke slowly, and others relied on power chairs for mobility. But they were impressive. As they shared their advice and the varied personal health regimens they followed, a question arose from the audience: “Why not put together a list of everything these folks are doing, so the rest of us can do the same things, too?”
In his keynote presentation, Dr. Richard Bedlack, founder and director of Duke University’s ALS clinic, announced that rather than evaluate all their therapies, he was looking at their medical files to study their commonalities.
Bedlack has identified that all the ALS reversals take the dietary supplement curcumin, and he is planning a clinical trial with Theracurmin.
But in the minds of many ALS patients and their families, longevity continues to equal expertise. And that’s not always the case.
I’m reminded of my mother-in-law, who lived to be 104. She shunned salads while extolling the benefits of Wiener schnitzel. On her 100th birthday, her nursing home celebrated with cake and invited local TV news reporters. When asked to what she attributed her long life, she looked straight into the camera, winked, and said, “Beer!”
Drinking beer and avoiding lettuce might not lengthen our lives, but having a good attitude may help.
Even Stephen Hawking, who lived with ALS for 50 years, is the subject of arguments among those who disagree as to what contributed to his longevity.
I chatted with a few fellow pALS after the conference, and we agreed that imitating another patient’s health routine doesn’t always work. We simply can’t duplicate the idiosyncrasies of someone else’s behavior, or especially their genes.
But we did note a familiar list of commonalities among the ALS reversals beyond their medications, treatments, and therapies. They chose to do the following:
- Consume healthy food;
- Reduce stress;
- Keep the body moving through therapeutic exercise;
- Surround themselves with positive, supportive people;
- Have a positive attitude.
The same list that can help us live longer or survive a cold is the very list that can help us learn to live well while living with ALS.
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Jenny Ward
Thank you for this positive article. I think if you check your facts with Dr. Bedlack, you will find that not all ALS reversals that he documented were taking Curcumin, though it is a common thread over several. He has documented over 40 reversals, of which, I believe less than ten were taking Curcumin. I appreciate your list at the end of the article. These are good ideas to strive for, whether living with ALS, or hoping to reverse the disease! Thank you!
Dagmar Munn
We're living in exciting times, aren't we Jenny? :-) Yes, Dr. Bedlack in his October webinar: https://www.neals.org/for-people-with-als-caregivers/educational-webinars/postcards-from-the-edge-updates-on-six-unusual-als-projects identified a list of supplements common to the ALS reversal's files he had at the time. Curcumin was common among three. At the conference, I remember hearing that more than three of the ALS reversals present mentioned having taken various forms of curcumin. Either way, we are moving towards uncovering important information about how to beat ALS. (yay!)
Scott Kominski Jr
Has anyone considered that late stage Lyme disease can mimic Als and curcumin has been shown to kill Lyme disease bacteria in tests just a question?
Jerry Lig
Yes actually most did not take curcumin and Dr. Bedlack himself has written me personally and has told me he has no idea why reversals occur...and most of these so called reversals are not believable. They've been attributed to prayer, marijuana, and other hokey things that we know do not reverse ALS. The reason Stephen Hawking lived so long is because he had a slow slow progression type but most people forget he was on full life support for most of that time, he would have never lived even close to that if he was not on life-support. You're welcome for facts.
Dagmar Munn
Jerry - - I follow Dr. Bedlack's webinars, published research and his website: http://www.alsreversals.com/ where he is collecting and publishing data on the now 45 confirmed reversals, such as this: https://www.tandfonline.com/doi/pdf/10.1080/21678421.2018.1457059?needAccess=true
Stephen Hawking was not a reversal; he was a pALS who lived a long time, using life-support measures as required for his symptoms.
I wouldn't discount the new information that is coming to light, simply because it doesn't fit the traditional notion or prognosis of ALS.
jerry Lig
I spoke with Dr. Bedlack personally and again he does not credit anything in particular for any reversal and I know Stephen Hawking was not a reversal, I am pointing out that the only reason he lived that long is because he was on life support if you read my comment properly. There is no new information, it is all speculation with no answers of what causes ALS and what cures it. If you have sound facts of what causes and cures ALS please let me know because my ALS is at a very advanced stage. I have tried everything that is supposed to help with a reversal and nothing has changed my progression. I do wish you the best of luck with your ALS because I know what a devastating disease it is. If you would like to discuss anything feel free to send me an email.
jerry Lig
Of course Stephen Hawking was not a reversal and he eventually passed away from ALS, my comment states the only reason he lived so long was because he was on life support. I specifically asked Dr. Bedlack what is the cause of these reversals and he said he has no idea. I'm simply skeptical of the new information because nobody can give me a straight answer on what the cause and cure is. It would be helpful if you listed them here for people like me who have an advanced stage ALS. Good luck with your fight.
Dagmar Munn
Jerry - - You are correct that Dr. Bedlack does not know what caused the reversals; he is currently identifying them and collecting/analyzing what is common among them. And you are also correct that no one knows what causes or cures ALS - - despite 150 years of medical research! All that we pALS can do is hope to slow our progression. Even doing that is a shot in the dark.
David H Hopkins
My symptoms of crippling in the hands, some loss of weight, strength and energy has barely progressed since my diagnosis 2 1/2 years ago. At that time I began consuming daily tinctures of St. John’s Wort, Ashweghanda, and CBD heavy cannabis. I eat a great diet that is mostly organic with many types of vegetables and a daily dish that includes good portions of turmeric and garlic. Except for the small amount in my tinctures I drink no alcohol. I work hard physically and usually walk 2 - 4 miles per day. I play rock and jazz with the bass guitar, volunteer in the community, work as a part time church janitor (though I am agnostic and not a member), and live in a home surrounded by natural beauty. I live positively day by day and have a friendly relationship with mortality. I wouldn’t be surprised if I live an extra long happy life. My health seems better than most people my age.
Dagmar Munn
David -- It's sounds like you are on the right track: doing what you find works best for you. Keep going! I too wish you an extra long and happy life :-)
Jonathan Maddock
Dagmar,
I noticed that there is a study testing 38 verified reversal cases. The study started September of 2018, and with an estimated completion date of August 1, 2020. It is a pilot case-control study attempting to discover how environmental exposure correlates to ALS reversals.
https://clinicaltrials.gov/ct2/show/study/NCT03706391
Dagmar Munn
Yes, thank you for sharing this Jonathan. It's another one of Dr. Bedlack's many projects looking into the topic of ALS reversals.
Fernanda Sousa silva
O meu pai morreu com a doença ELA. Mais 2 irmãos do meu pai também morreram com o mesmo, fizemos a genética e eu e uma irmã deles, minha Tia somos positivas
Dagmar Munn
Fernands, I am sorry that you have lost several family members to ALS. Knowing you have the ALS gene, will give you a head-start on doing as much as you can to not manifest symptoms -- for as long as you can. My list of 'life balancers' will serve you well. Good luck and stay positive!
Sheila Lowrie
I was privileged to attend the Healing ALS Conference in SLC Utah. We met a man who was verified to have ALS, at one time he had a tracheotomy and feeding tube, he no longer needs either, in fact I could see the scar on his neck. I don't believe the fact that he used a cane to walk takes away from the fact that he can now eat, speak and breathe on his own. I think that is a reversal regardless of the fact that he uses a walker or wheelchair, or walks wobbly. Others were diagnosed with bulbar onset ALS who are still speaking albeit slowly but speaking, eating, drinking when they at one time were unable to.
None of the reversals claimed to be ALS free, quite the opposite, they said while they have ALS they are managing it. I for one, would be delighted to 'manage' ALS much as HIV, diabetes, arthritis, MS, and other diseases are managed. If I am able to throw out my wheelchair and walk with a cane or walker I think I could safely claim to have reversed ALS...................
Dagmar Munn
How exciting Sheila that you were able to attend and experience it all in-person! Yes, I agree that being able to successfully manage our ALS is a priority goal.
I think many folks were expecting the ALS reversals to be totally symptom-free (thus, my slight issue with the term 'reversal'). As you said, regardless of their current state, these fine examples showed that it can be done. We can have hope :-)
Cindy
Sheila, it sounds as though we are in the same boat so to speak. I would give anything to be rid of the wheelchair and use walker and cane for walking. I would consider it a victory over ALS. Best to you.
Sheila Lowrie
Thank you Cindy! Best to you as well.
Akshay
Hi Dagmar, My uncle in India has been diagnosed with ALS. He started having pain in leg in mid 2015 and it progressed. He has been using walker since last 2+ years and is just managing to walk a few steps using walker, takes a break for few seconds and then walks again. He hardly feels power in lower limbs.
I can share more details. Is there anything you would suggest to try to reverse or stop the progression of the disease?
Akshay
He has foot drops, feels stiffness in calf muscle, sometimes feels vibration in leg nerves.
Dagmar Munn
Akshay - - we ALS patients are all so different: our initial level of health, where we have symptoms, access to medical care & support and what we are willing to do... there is no one size fits all recommendation. However, you can contact your local ALS Association http://www.alsa.org/ (or read their online materials) and learn the basic needs for someone with ALS. This includes: proper medication, assistive devices, good nutrition, a safe home, social interaction and regular therapeutic movement. Having good emotional well-being has shown to slow progression as well.
As was stated in the ALS reversals conference and in my column, there is no sure-fire way to stop progression of symptoms -- yet. But I believe through sharing of experiences and more research into this area -- an answer will be found. Best wishes to you and your uncle.
agentjoe72
Hey - a good site of curcumin
http://www.alsreversals.com/roar.html
Dr Neena Jain
Hi Akshay
Where in India is your Uncle. My husband Dr Sanjiv Jain is a patient of ALS. Can you share your contact details. My no is 9414008666 in India
Manuel Lopez
Why can’t the fda fast track nurown like they did radicava? It has been shown to help.
Michelle Lorenz
I attended the Healing ALS Conference as I had 7 dogs with the canine version of ALS called Degenerative Myelopathy and wanted to learn more as I believe canine research can help pALS.
We are hopeful that ALS community will study some of the dogs with Degenerative Myelopathy as there's a large population of dogs who are homozygous for the SOD1 mutation (autosomal recessive in dogs) and yet they never develop DM symptoms. Is there another gene modifying the expression of the SOD1 mutation? Is that expression being suppressed by nutrigenomics like being used by many pALS? If we can identify that, perhaps we can suppress the expression in others.
We are also seeing some reversals in the canine world with dogs using the same AOTs as being studied by Dr. Bedlack. With shorter lifespans, tons of littermates and a plethora of genetically inherited SOD1 "at risk" dogs, we have a statistically significant number for sampling.
While the pALS may have been using different AOTs, there were some consistencies in the AOTs that the reversals were using. All were using various things to:
1. reduce oxidative stress
2. improve mitochondrial function
3. reduce neural inflammation
4. improve the body's autophagy of misfolded & aggregated proteins
5. improve cellular signaling
6. improve health of myelin sheath, oligodendrocytes & astrocytes
7. detox the body of heavy metals and other toxins
But I also wanted to remark I think it's inaccurate to ONLY say: "A few still limped, some spoke slowly, and others relied on power chairs for mobility."
Mark Manchester is still limping but he went from being on a feeding tube & trach to walking without assistance. And most people would never guess three of the nine ever had ALS: Steven Bishop, McFinn and Gunther Schopfer, who was just confirmed to be Dr. Bedlack's #44 reversal just this week. All three jumped up on the stage, used their legs, arms and speech with no impairments.
In contrast, previously, McFinn had almost completely lost all limb function with the exception of some sensation in a few fingers & he's a longtime survivor. Steven was in a wheelchair and on the cover of Parade Magazine for his work with Jerry Lewis & MDA. He is coming up on a decade of reversal of his symptoms. And, while Gunther is only at 2 years post diagnosis, his "reversal" was much quicker than the other pALS and its using the new science of NAD & SIRTUINS that has been extensively studied by Lenny Guarente of MIT and David Sinclair at Harvard.
Dr. Bedlack has also mentioned that other neurologists have had patients with reversals but they just "fell off the map" as they stopped visiting their doctors once they had reversed. Thus, the 44 confirmed reversals are apparently not the only ones -- either in the canine or human population.
The other notable comment that caught my attention on the panel that last day... NOT ONE OF THE REVERSALS WAS USING PHARMACEUTICAL DRUGS.
Dagmar Munn
Hello Michelle - - I remember hearing you speak (I watched online) at the Healing ALS Conference! You are doing remarkable work with bringing awareness to Degenerative Myelopathy in dogs. And hopefully, further research and developments in this area will benefit both dogs and humans.
The conference was impressive and the pALS who spoke of their reversals, even more so! In fact, I wrote a follow-up column highlighting one of the reversals: Cathy Cummins! http://alsnewstoday.com/2019/11/05/role-models-heroes/ This certainly was an excellent gathering of current alternative medicine information and treatments. I have not heard of "AOT" but assume it is the new, trending acronym for alternative therapies and treatments. (I'm always trying to keep up!) Hopefully, we will continue to read updates on the pALS who are reversals and Dr. Bedlack's progress.
In the world of searching for a cure for ALS, I believe that there are no bad actors (except of course, the spammers!). My training has taught me to look at what the best of both worlds can offer - - and combine it to be of use. This is "integrative medicine" - - rather than arbitrarily discounting pharmaceuticals (modern medicine) over alternative medicine; let them complement each other to aide in our healing. If you are interested, this sums up my background in Integrative Medicine. https://alsandwellness.blogspot.com/2016/05/cam-wellness-als-and-wellness.html
Thank you for your comments. We all look forward to continued news about how to best stop (cure) ALS.
Maria
Hello Dagmar, My name is Maria and my husband was diagnosed with ALS November 2018,He has slurred speech, loss about 55lbs,No arm muscle, weakness on both arms, elbows and wrists. He is doing homeopathic Theraphy and is taking curcumin. I feel really like there is more I can do but sadly I don't know where else to look. Do you know of anything that could help with muscle loss or arm weakness? Any advice is greatly appreciated.
Dagmar Munn
Maria, I am sorry your husband's ALS symptoms are progressing. I hope he is seeing a neurologist and attends an ALS Clinic regularly. And he is on one (or more) of the recommended medications; like Riluzole. As for weight loss and muscle loss, his doctor and clinic team (PT and Dietitian) should be consulted. I caution you from trying to take on the role of his solo medical advisor - - you may unwittingly limit him from helpful treatment or subject him to unhealthy/dangerous alternative therapies. My advice is to discuss all this with his doctor. Best wishes to you both.
Michael
Hi, Have there been any documented PLS reversals?
Sincerely,
Mike
Dagmar Munn
Mike, here is a link to Dr Bedlack's website with information on ALS reversals https://alsreversals.com/st-a-r-program/
He has documented 50 people so far who were diagnosed with ALS and now no longer have symptoms.
As for specific PLS reversals, I do not know. But perhaps you can dig into the data in the research links, or contact Dr Bedlack - - I understand he does reply to those who email him. Here is another helpful link as well https://www.tandfonline.com/doi/full/10.1080/21678421.2018.1457059
Mike
Thank you for the guidance. I will follow up with some research.
Sincerely,
Mike