I’ll Have What She’s Having: ‘ALS Reversals’ Share Good Advice

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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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.

When Dagmar Munn was diagnosed with ALS in 2010, she tapped into her nearly 30 years of professional experience helping others reach and achieve their health goals. She not only follows her own wellness and fitness advice but inspires and teaches others to do the same through her ALS and Wellness Blog. Dagmar enjoys finding humor in life’s situations and spends her free time pursuing creative projects in fiber arts.
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When Dagmar Munn was diagnosed with ALS in 2010, she tapped into her nearly 30 years of professional experience helping others reach and achieve their health goals. She not only follows her own wellness and fitness advice but inspires and teaches others to do the same through her ALS and Wellness Blog. Dagmar enjoys finding humor in life’s situations and spends her free time pursuing creative projects in fiber arts.
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18 comments

  1. Jenny Ward says:

    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!

  2. David H Hopkins says:

    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.

  3. Fernanda Sousa silva says:

    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 says:

      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!

  4. Sheila Lowrie says:

    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 says:

      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 says:

      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.

  5. Akshay says:

    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?

    • Dagmar Munn says:

      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.

  6. Dr Neena Jain says:

    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

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