Alternative Therapies & Thinking About Parkinson's

The real voyage of discovery consists not in seeking new landscapes, but in having new eyes.          

—Marcel Proust 



 A catalog of alternative treatments and thinking, including the experiences of people with Parkinson’s (PwP) who are experimenting with these treatments. 


Coming soon in beta form will be a self-reporting spreadsheet, where PwP can report (and update) their experiences with alternative treatments. This centralized data collection portal is being created because self-reporting often gets buried and scattered on discussion boards and blogs and valuable information gets lost. 


If you'd like to contribute to what is included in this database, you can take a short survey by clicking the link below. 

https://www.surveymonkey.com/r/DHBVSZ5

Elementals

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Elementals

Any alternative treatments for Parkinson’s will likely never be sustainable without a good foundation of the elementals: diet, exercise, sleep, reduced stress, human connection, sunlight and nature. Exercise seems to be the single most studied practice to reduce symptoms and slow progression. 


Human Connection

Bastyr University Research Institute researcher Dr. Laurie Mischley found 

that the greatest predictor of Parkinson’s progression rate is how you answer this question: Are you lonely? Discussion boards are listed below. Local PD organizations will have support group information.  Human connection is medicine. 


Discussion Boards:

Parkinson’s Movement @ Health Unlocked

Warm, supportive, curious humans exchanging ideas about research and self-experiments. 

https://healthunlocked.com/parkinsonsmovement


Parkinson’s Alternatives Healing @ Facebook

“An open forum to discuss alternative, nontraditional and spiritual approaches to Parkinson’s disease.” Lots of inspirational resources shared.

https://www.facebook.com/groups/1420381321604545/


Parkinson’s Disease @ Neurotalk Communities 

https://www.neurotalk.org/forum34/


Nature

The Significance of Experiences of Nature for People with PD:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4515656/


Participants who took a nature walk changed their thinking pattern; brain scans matched those improved moods.

https://www.michaeljfox.org/foundation/news-detail.php?nature-walks-may-be-good-for-your-brain-study-finds


Exercise Is Medicine

The Effects of Physical Activity in Parkinson’s Disease: A Review

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5088404/

High-Intensity Exercise Delays Parkinson’s Progression

https://www.sciencedaily.com/releases/2017/12/171211123113.htm


Walking

John Pepper’s Story

https://www.youtube.com/watch?v=_QVIdPo71gI 

John McPhee TED Talk                                

https://www.youtube.com/watch?v=fYtaJukH-SA

   

Music and Gate Training

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4553388/

https://www.ctvnews.ca/health/instantaneous-results-how-music-transformed-a-man-with-parkinson-s-1.3248622

http://lermagazine.com/article/music-therapy-and-gait-rehab-to-a-different-beat

Pamela Quinn (PwP) Gait Training

https://pdmovementlab.com/blog/2017/1/1/how-to-improve-your-gait-in-30-seconds-music-and-parkinsons


Rock Steady Boxing: Boxing Curriculum for PD

https://www.youtube.com/watch?v=Ngeihe5MU9U

https://www.rocksteadyboxing.org


Biking and Forced Cycling

https://www.davisphinneyfoundation.org/blog/exercise-is-medicine-for-the-brain/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3634143/

http://www.pedalingforparkinsons.org


Dance

“There are no patients. There are only dancers.”

https://danceforparkinsons.org

https://danceforparkinsons.org/resources/research

https://www.youtube.com/watch?v=8k3-lwWRYYk (Capturing Grace Trailer)


Dancing as Medicine for PwP, Rafi Eldor’s TED Talk          

https://www.youtube.com/watch?v=7cBYGh2E6t4


Delay the Disease Program

Fitness program designed to empower PwP by targeting their symptoms and optimizing their physical function.

http://www.delaythedisease.com

https://www.youtube.com/watch?v=YrZTho_o_is&feature=share


PD on the Move’s Extensive Exercise Library

https://www.pdonthemove.com/start/exercise



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Healthy Diet

A growing body of evidence suggests that nutrition may play an important role in Parkinson’s. Epidemiological and biochemical studies recently identified promising components in certain food groups, like phytochemical-rich fruits and vegetables, that may elicit neuroprotection in PD.  

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3945400/

https://scienceofparkinsons.com/2017/09/18/food/ (Nutrition PD study from Bastyr University)

https://www.michaeljfox.org/foundation/news-detail.php?ask-the-md-what-the-best-diet-for-parkinson (PD Diets overview)

Diet-based

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Ketogenic Diet

Low-carb, high-fat diet, where the body produces ketones in the liver to be used as energy. 


History of Keto Diet

https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1528-1167.2008.01821.x

Neuroprotective and Disease-Modifying Effects of Ketogenic Diet

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2367001/

Dr. Perlmutter, Improving PD Symptoms with Ketogenic Diet

https://www.drperlmutter.com/ketosis-parkinsons-disease-improving-symptoms-with-a-ketogenic-diet/

PD & Keto

https://www.ruled.me/parkinsons-disease-ketogenic-diet/

Tim Ferris Interviewing Dom D’Agostino

https://www.youtube.com/watch?v=yopZxm4smOI

Your Brain on Keto, Interview w/ Dom D’Agostino

https://highintensityhealth.com/dom-dagostino-phd-your-brain-on-keto/

Alzheimer’s and the Ketogenic Diet, Max Lugavere podcast

https://www.youtube.com/watch?v=tE3uZ7AUSDU


PwP using ketogenic diet:
Colin Potter: https://www.youtube.com/watch?v=qDG6zG-xnx4

William Curtis: https://www.youtube.com/watch?v=5sYClVQyMLM

Jeanette: https://healthunlocked.com/user/jeanette2372



Fasting/Intermittent Fasting

Restricting Diet May Reverse Early Stage Parkinson’s

https://news.ohsu.edu/2005/11/14/restricting-diet-may-reverse-early-stage-parkinson-s

Ways Intermittent Fasting Improves Brain Function

https://drjockers.com/fasting-improves-brain-function/

Why Fasting Bolsters Brain Power,  Mark Mattson, Johns Hopkins University (National Institute on Aging)

https://www.youtube.com/watch?v=4UkZAwKoCP8

Intermittent Fasting Benefits + Results, Diet, Schedule

https://www.selfhacked.com/blog/intermittent-fasting/

Fasting Bolsters Brain Power TED Talk: Mark Mattson, Johns Hopkins (National Institute on Aging)

https://www.youtube.com/watch?v=4UkZAwKoCP8


Gut Repair

Gut Biome and PD:

Evidence Suggests Parkinson’s Might Not Start in the Brain

https://www.cureparkinsons.org.uk/News/parkinsons-starts-in-gut

Does Parkinson’s Begin in the Gut?

https://www.scientificamerican.com/article/does-parkinsons-begin-in-the-gut/

Association between Parkinson’s Disease and Helicobacter Pylori

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4828559/

Gut Microbiota Dysfunction as Early Diagnostic Biomarkers in the Pathophysiology of PD

http://www.jnmjournal.org/journal/view.html?uid=1343&vmd=Full&
PD’s Intimate Relationship to Gut Health (Dysbiosis and Intestinal Permeability)

http://www.doctorschierling.com/blog/parkinsons-and-gut-health

Repairing the Gut:

https://wellnessmama.com/23461/leaky-gut-diet/

http://www.gapsdiet.com/

https://www.foundmyfitness.com/episodes/the-sonnenburgs

https://bengreenfieldfitness.com/article/digestion-articles/how-to-fix-your-gut/



Other Food Protocols

Wahls Protocol:

Terry Wahls reduced advanced MS through diet and supplements. She put together her protocol to treat herself after poring through published studies about MS, Alzheimer’s and PD, all of which involved shrinkage of the brain. 

Wahls’ TED Talk, Minding Your Mitochondria

https://terrywahls.com/tedxiowacity-minding-your-mitochondria-with-dr-terry-wahls/

https://thequantifiedbody.net/ep-3-mitochondrial-health-autoimmune-and-chronic-disease-dr-terry-wahls/episdoe3b-1/ (Wahl interview)


PwP Using the Wahls Protocol:

https://terrywahls.com/tag/parkinsons/


GAPS Diet:

Treating chronic inflammatory conditions in the digestive tract as a result of a damaged gut lining.

http://www.gapsdiet.com

https://draxe.com/gaps-diet-plan-protocol/


Gluten Free

http://www.greenmedinfo.com/blog/dramatic-recovery-parkinson-s-patient-gluten-free-diet

https://www.celiac.com/blogs/entry/2269-is-there-a-link-between-parkinson039s-disease-and-gluten-intoleranceceliac-disease/


Paleo Autoimmune

https://thepaleoway.com/wp-content/uploads/2015/11/TPW_AIP-Food-List.pdf



Movement Neuromuscular Retraining-Based Treatments

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Neuroplastic Movement Therapy

Joaquin Farias’ work stems from his own self-experimenting with dystonia, which struck him as a 21-year-old, forcing him to quit his studies to become a professional musician. With a PhD in medicine and sciences applied to sport and exercise, Dr. Farias’s approach relies on neuroplasticity, the brain’s ability to rewire itself. Training clients to move again, he says, helps their brains relearn to process motor and sensory signals normally. Dystonia and Parkinson’s are closely related and dystonia is often a symptom of PD. Farias is now beginning to expand his work to those with Parkinson’s.  His books include Limitless: How Your Movements Can Heal Your Brain and Intertwined: How to Induce Neuroplasticity. 


Accounts of people with dystonia and one PwP working with Farias (note: his work with PD is new; these accounts are dystonia patients): 

Journalist Federico Bitti’s TED Talk: https://www.youtube.com/watch?v=DwkHK3rfKO0

Lena McCullough’s PD blog: https://pathwithpaws.com/blog/2018/02/04/my-rehabilitation-program-for-parkinsons-and-dystonia/

     

Gyro Kinetics

Gyro Kinetics is a rehabilitation modality based on integration of movement, touch and music in order to help the human body restore its physical, emotional, mental and physiological balance and retain it. It taps into the body’s innate capacity of self-healing. Movement and expression are considered relevant to maintain the contact with the body and with the outward world. Music also stimulates also the natural pharmacology of the body.

https://www.timesofisrael.com/how-an-israeli-healer-treats-parkinsons-through-talk-and-dance/

https://www.israel21c.org/pioneering-approach-to-parkinsons-disease/


PwP:

https://vimeo.com/136816033 (Michael Wiese helped to publish a book about Gyro Kinetics and his experience. Goodbye Parkinson’s, Hello, Life.)

https://twitchywoman.com/2016/02/08/goodbye-parkinsons-hello-life/

http://aboutmyparkinsons.co.uk/goodbye-parkinsons-hello-life/

https://tpsjourney.wordpress.com


Gary Sharpe’s Neural Exercises and Movement Experiments

Pamela Quinn’s PD Movement Lab

Pamela Quinn, a professional dancer who has had Parkinson’s disease for over 20 years, invents tools that allow PwP to rediscover mobility and greater physical freedom.

https://pdmovementlab.com/about/


Other Neuromuscular Retraining Movement Systems

Alexander Technique

A Case Study in Generating Hope for a Degenerative Condition

https://www.alexandertechnique.com/articles/parkinsons.pdf


Feldenkrais

Designed to promote body and mental well-being by conscious analysis of neuromuscular activity via exercises that improve flexibility and coordination and increase ease and range of motion.

Randomized controlled trial of the Alexander Technique for idiopathic Parkinson’s disease.

https://www.ncbi.nlm.nih.gov/pubmed/12428818


Hanna Somatics

Neuromuscular retraining. Turns off stuck-on fight/flight response in the body.

PwP experience: 

https://www.patientslikeme.com/treatment_evaluations/browse/20176-somatics-exercises-hanna-somatic-education-side-effects-and-efficacy?brand=f



Alternative Thinking

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Janice Walton-Hadlock and PD—Being Stuck in Freeze/Shock Mode

Dr. Janice Hadlock, a Chinese medicine doctor, ran a Parkinson’s clinic for fifteen years and sees PD as a curable disease that stems not from the body’s chemical circuitry, but instead from the electrical circuitry, caused by a person’s system remaining stuck in shock or freeze mode, even after a perceived trauma has passed. Her latest book, Stuck on Pause, shares simple “techniques that shift a person out of the neurological mode that is triggered during the severe shock that accompanies life-threatening physical or emotional damage.” All of Hadlock’s research and books, including Recovery from Parkinson’s and Stuck on Pause, are available for free at 

https://www.youtube.com/watch?v=eT4060GeodI

Note: Her system applies to idiopathic PD, not PD stemming from severe toxic exposure. She does not recommend her program for people on traditional PD medication. 


PwP experience:

https://fredphillips.wordpress.com/2017/07/18/healing-parkinsons-disease-naturally-recovery-inspiration-32-the-new-perspective-on-fear/

http://mybodycanlearn.com/dr-steve/parkinsons.html


Alternative Treatments: Meds & Supplements

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Plant-Based MAO Inhibitors

MAO inhibitors prevent the breakdown process of neurotransmitters dopamine and serotonin, allowing them to remain available longer in the synapses between nerve sells.

https://thesunlightexperiment.com/blog/2017/2/14/natural-mao-inhibitors


MAO inhibitor nicotine :

https://www.medicalnewstoday.com/articles/260354.php

https://www.fight-parkinsons.org/wp-content/uploads/2016/05/Nicotine-Patch-Therapy.pdf

Nicotine-containing foods:

https://www.livestrong.com/article/293186-list-of-foods-that-contain-nicotine/


LDN, Low-Dose Naltrexone

Low-dose NAD (though taken in a low dose this is still a pharmaceutical drug).

Naltrexone is a drug that was approved by the FDA in 1985 to treat opiate dependencies. The term  “LDN”  refers to the use of naltrexone at doses below 10 mg per day. Naltrexone exhibits novel and paradoxical effects when administered at these low doses, as discovered by Penn State University research. Since this discovery, numerous laboratory and animal studies have been carried out to investigate the novel effects of LDN in cancer and autoimmune disorders. In 2007, results of the first clinical trial using LDN for Crohn’s disease were published (Smith JP et al. Am J Gastroenterol. 2007;102(4):820-8), followed by publication of a study on multiple sclerosis in 2008 (Gironi M et al. Multiple Sclerosis. 2008;14(8):1076-83) and fibromyalgia in 2009 (Younger J and Mackey S. Pain Med. 2009;10(4):663-72). LDN is sometimes controversial on discussion boards. Seems to work but loses efficacy over time. 

https://www.ldnscience.org

https://www.ldnresearchtrust.org

http://www.blogtalkradio.com/parkinsons-recovery/2014/06/17/all-about-ldn-for-parkinsons-disease

PD & LDN 

https://sites.google.com/site/dudleyslowdosenaltrexonesites/treating-parkinson-s-with-ldn  

https://sites.google.com/site/dudleyslowdosenaltrexonesites/home  (LDN studies)


PwP experience, all from LDN Research Trust (can skip ahead; a lot of blather at the beginning): 

https://vimeo.com/244795062

https://vimeo.com/244705798

https://vimeo.com/113727748

https://vimeo.com/123481728

https://vimeo.com/119671054

https://vimeo.com/107856242

https://vimeo.com/107852021


Regimens That Have Slowed or Reversed Symptoms of PwP

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Multi-pronged Regimens/Protocols

In a lecture Professor Peter Jenner at Kings College London stated, "Don’t expect a single treatment to work in everybody. This [PD] is a syndrome . . . with differing patterns, different symptoms, different subtypes with no single cause.” Similarly In The End of Alzheimer's, Dale Bredesen describes Alzheimer’s as multifactorial and like a “roof with 36 holes.” You can’t plug a single hole and expect to achieve much; instead one must repair as many holes as possible."


Joe @ HealthUnlocked

Joe is  52 with a genetic diagnosis of SCA1  or ataxia (which shares similarities to PD in its pathology but progresses faster). He’s currently symptom free and gaining strength and endurance. He credits a multi-pronged approach, with exercise (30 minutes 4-5 times a week at 80% max heart rate) being the single most important thing he does. His daily regimen and posts on scientific research about supplements, excercise, and other alternative resources can be found here:

https://healthunlocked.com/ataxia-uk/posts/137505041/my-sca1-progression-has-stopped.-my-alternative-therapy-for-sca1.

https://healthunlocked.com/user/sunvox

Roy @ HealthUnlocked (thiamine protocol)

“I have gone from slow motion to normal motor action since joining the growing number of PwP that have started B1 regimen/protocol.” Roy’s description of his symptom reduction, daily regimen, and research can be found here:

https://healthunlocked.com/user/royprop