EPISODE TITLE: Winning the Fight Against ALS - Part 2

EPISODE SUMMARY: In this episode of NOGGINS & NEURONS: Brain Injury Recovery Simplified, Doro and Deb continue to talk about Amyotrophic Lateral Sclerosis (ALS) or, Lou Gehrig’s Disease with Dr. Tedone, the founder of the Deanna Protocol and his daughter, Deanna, who was diagnosed with ALS 13 years ago. 

In this podcast, Dr. Vincent Tedone and Deanna Tedone discuss:

  • Introduction and Purpose of the Podcast 0:01

  • Pete Levine's Absence and Podcast Continuation 1:46

  • Discussion on ALS Diagnosis and Neurofibrillary Tangles 3:01

    • Dr. Tedone explains that it takes at least two years for a definitive ALS diagnosis due to reluctance from the medical profession.

    • Neurofibrillary tangles are found in the cerebral spinal fluid, indicating cellular energy deficiencies.

    • Gene mutations are linked to abnormal protein formation, which can cause cancer.

    • Dr. Tedone argues that infections, not gene mutations, may be the root cause of cancer.

  • Borrelia Infection and Its Impact on Health 6:05

    • Dr. Tedone discusses the role of Borrelia infection in various diseases, including arthritis, rheumatoid arthritis, psoriatic arthritis, lupus, and cancer.

    • Cortisone suppresses inflammation but does not address the underlying infection, leading to disease progression.

    • Treatment for Borrelia includes opening cysts with metronidazole, using oregano oil or artemisinin to open biofilms, and administering antibiotics.

    • The treatment protocol involves alternating antibiotics every three months to prevent resistance.

  • Testing for Borrelia Infection and Case Studies 10:01

    • Dr. Tedone mentions the Accu Dart infectious disease test and the need for provocative tests before serology tests.

    • Dr. Tedone shares two case studies: one where a patient's worsening condition was linked to his wife's co-infections, and another where an emergency room doctor's wife's condition was attributed to Borrelia.

    • The discussion highlights the importance of consistent treatment and the challenges of finding accurate tests for Borrelia.

  • Deanna's Protocol and Its Benefits 18:54

    • Dr. Tedone and Deanna discuss the Deanna Protocol, which includes caprylic acid and coenzyme Q10, and its benefits in maintaining mental acuity and energy.

    • Dr. Tedone shares personal experiences of using the Deanna Protocol and its positive effects on his and his wife's health.

    • The protocol is designed to support nerve cell communication and improve cognitive function.

    • Dr. Tedone emphasizes the importance of consistency in following the protocol for effective results.

  • Advice for Newly Diagnosed Patients 20:31

    • Doro asks Deanna for advice for newly diagnosed patients.

    • Deanna advises maintaining a regimented medication regimen and surrounding oneself with supportive, informed individuals.

    • The importance of challenging oneself and maintaining a positive attitude is highlighted.

    • Dr. Tedone shares a quote from his book, emphasizing the importance of persistence and continuous learning.

  • Challenges and Research in ALS Treatment 33:15

    • Dr. Tedone discusses the challenges of conducting research and the need for clinical feedback to guide research efforts.

    • The Deanna Protocol has shown promising results in ALS patients, with an 80% approval rating in a study by USF.

    • The protocol is compared favorably to dorozolamide, which blocks glutamate, in terms of symptom management and disease progression.

    • The discussion includes the need for better tests and the importance of funding for research.

  • Funding and Support for Research 42:28

    • Deanna mentions the challenges of funding and the importance of donating to organizations that directly support research.

    • The Winning the Fight Foundation is highlighted as a reliable organization for donations, with 99% of funds going directly to research.

    • The foundation is a 501(c)(3) organization, making donations fully tax-deductible.

    • Doro encourages listeners to visit the foundation's website for more information and to support the research efforts.

  • Conclusion and Final Thoughts 48:33

    • Deb thanks the guests for sharing their stories and research, emphasizing the importance of spreading awareness.

    • Dr. Tedone and Deanna express their gratitude for the opportunity to share their experiences and research findings.

    • The episode concludes with a call to action for listeners to share the podcast with others who may benefit from the information.

    • Contact information for the podcast and the foundation is provided for further inquiries and support.

  • Resources and References:

    • Maintaining Optimal Quality of Life
      • Support groups
      • Proper equipment & Knowledge of use
      • RESOURCES:
        • ALS Association-enter zip code to find assistance in your state. In FL: General Inquiries 
        • Community support groups & counseling
        • Transportation assistance
        • Equipment loan bank-people with ALS can borrow assistive equipment on long term basis
        • Assistance finding & obtaining community & government resources
        • Multidisciplinary medical care under one roof
        • FAAST-FLORIDA ALLIANCE FOR ASSISTIVE SERVICES & TECHONOLGY: org
          • FAAST is a program designed to provide assistive technology to Floridians with disabilities and their loved ones. This program offers a range of activities, including device loans, demonstrations, reutilization, and training, to ensure Floridians have access to the latest in assistive technology. Additionally, FAAST provides information and assistance, as well as a financing program available state-wide. With a commitment to accessibility and innovation, FAAST is leading the way in assistive technology in the state of Florida.
        • CENTER FOR ASSISTIVE TECHNOLOGY-University of Buffalo
          • The Center for Assistive Technology (CAT) is a non-profit organization that conducts research and provides educational and service programs to increase consumer knowledge related to assistive technology for persons with disabilities.
          • CAT is also the Western New York Regional Center for the New York State TRAID Program, for which it coordinates information on technology-related expertise and resources for people with disabilities.
        • SHEPHERD CENTER-CENTER FOR ASSISTIVE TECHNOLOGIES Atlanta, GA
          • The Center for Assistive Technologies at Shepherd Center helps individuals regain independence after a neurological injury or condition. Challenges with mobility and cognitive function can impact daily activities like using devices, controlling home environments, and driving. Our team develops, tests, and customizes assistive technologies to support rehabilitation, empowering you to navigate life with greater ease and autonomy.
        • UPMC CENTER FOR ASSISTIVE TECHNOLOGY-Pittsburgh, PA
          • The CAT is an interdisciplinary center comprising multiple outpatient clinics that offer a variety of services to assist you.
        • University of North Carolina Wilmington Center for Assistive Technology
        • Miami University Center for Assistive Technology Oxford, OH
        • Assistive Technology Center New Jersey
        • Utah Center for Assistive Technology
        • University of South Carolina Assistive Technology Program

    We hope you enjoyed this episode of Noggins And Neurons. As always, we want to hear from you! Email us at Nogginsandneurons@gmail.com

     

    THERAPY PRACTICE RESOURCES:

    DEB’S RESOURCES

    PETE’S blog and book, “Stronger After Stroke: Your Roadmap to Recovery” 3rd edition:

     

    DORO’S OT PRACTICE – The Neuro Hub

    REQUEST TO BE A GUEST ON NOGGINS & NEURONS. If you’re passionate about stroke recovery and have information or a story you believe will help others, we’d love help you share it on the show. Complete the guest request form below and let’s see if we’re a good fit!

    • Guest Request Form
    • MUSIC: “Soft Inspiration” by Scott Holmes/Scott Holmes Music/scottholmesmusic.com

     

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