Last week, the Michael J. Fox Foundation (michaeljfox.org) hosted a one-hour webinar on complementary and alternative medicine for Parkinson’s. Actually, it was a re-broadcast of a webinar they presented in May 2015.
Complementary and alternative medicine (CAM) is the term for medical products and practices that are not part of standard care. Topics covered in the webinar include acupuncture, herbs, vitamins, and diet.
You can find a link to the webinar recording here:
www.michaeljfox.org/
The webinar featured a Parkinson’s patient, Gary Vallat; a neurologist, Danny Bega, MD, from Northwestern; and a research scientist, Laurie Mischley, ND, MPH from Bastyr University.
Brain Support Network volunteer Denise Dagan listened to the webinar recently. Here are her big takeaways, which apply to the disorders in our BSN group as well:
Stress exacerbates symptoms of Parkinson’s disease. It is, therefore, generally agreed that complementary therapies that reduce stress alleviate Parkinson’s symptoms. This can include massage, acupuncture, yoga, meditation, etc.
Dr. Bega discussed a small study where half did hatha yoga and the other half did conventional resistance exercise (weights). Both groups’ mobility benefited as well as non-motor symptoms (mood, anxiety, sleep, quality of life).
People reporting loneliness are those doing the worst, symptomatically. Those staying active and social have a better quality of life. Support groups should be a part of the medicine to treat PD.
There is no definitive evidence showing the benefit of one vitamin or supplement, just some animal and lab indicators that have been disappointed when applied to humans. Best course is to minimize inflammation, maximize nutrient density, energy production, and eat for a healthy microbiome (intestine/gut). That means eat healthy oils (coconut and olive), fish (omega 3 fatty acids), nuts and avocado, colorful fruits and vegetables for their antioxidant properties, and yogurt (minimal dairy).
PD may be, in part, a metabolic disease. Alzheimer’s was recently termed, “Type III Diabetes,” because the AD brain is not effective at turning glucose into energy. PD is similar when given a bunch of carbs, so eating more healthy fats and proteins makes PD brains more energy productive. That could go a long way in fighting fatigue, a common symptom of PD.
Denise’s full notes are copied below.
Robin
What’s the Alternative? What to Know about Complementary Medicine for PD
Webinar Host: The Michael J. Fox Foundation
May 21, 2015 – rebroadcast March 17, 2017
Dave Iverson interviews: Parkinson’s patient, Gary Vallat; neurologist, Danny Bega; and assistant research scientist, Laurie Mischley.
What we’ll cover today:
* What do we mean by complementary and alternative medicine?
* What practices may help manage Parkinson’s symptoms?
* What do we know about the effects of supplements on Parkinson’s?
* Can a specific diet make a difference?
* Why is it difficult to study the effects of alternative approaches?
What do we mean by complementary and alternative?
Complementary and alternative medicine (CAM) is the term for medical products and practices that are not part of standard care. More current thinking is ‘integrative medicine,’ which is using what works, regardless of the terminology.
– Complementary medicine is used together with standard medicine.
– Alternative medicine is used in place of standard medical care.
– These methods still should be evaluated for safety and efficacy.
There are five domains of CAM:
* Biologically based approaches (diets, herbs, vitamins)
* Manipulative and body-based therapies (massage, chiropractic, osteopathy)
* Energy therapies (magnets, Qigong)
* Mind-body interventions (yoga, spirituality, relaxation, meditation)
* Alternative medical systems (homeopathy, naturopathy, Ayurveda)
Gary Vallat found benefit from acupuncture and when that resulted in immediate response. APDM has a wearable device that shows measurable tremor which has shown marked reduction for Gary during acupuncture, sleep, and in a sweat lodge.
What do we know about the efficacy of acupuncture?
* It is better studies than other CAM, some with placebo controls.
* It is safe.
* Anecdotal reports are positive.
* Effect on mobility, rigidity, tremors are mixed because those with placebo controls showed less measurable results which could be due to insensitive measuring devices.
All results show short term benefit.
How can Meditation, Yoga and other Activities Help Manage PD?
* Practices that help alleviate and manage stress – which exacerbate Parkinson’s symptoms – can help ease symptoms.
* Activities such as meditation and yoga can also help reframe the impact of symptoms, allowing a level of acceptance.
* These methods encourage personal empowerment.
* Group activities and socialization can discourage isolation.
* Yoga has shown impact on mobility, anxiety and quality of life.
* Creative pursuits – painting, writing, dancing, playing music – are also stress relieves and can boost self-confidence.
Stress increases PD symptoms, so anything that relaxes you and relieves stress will relieve PD symptoms.
Laurie Mischley cites a study of heart rate variability being correlated with non-motor symptoms (notoriously under treated by conventional therapies – ex: OH, saliva, bowel issues). Studies show improvement of heart rate variability during tai chi, yoga, and meditation. That means technology is catching up with anecdotal evidence.
Dave Iverson asked about wearable devices providing a continuous source of physical information. Laurie Mischley says technology may not be the best source of efficacy. She is working on a patient-reported outcome measure (33 questions) about bowels, handwriting, sleep, etc. because they are better at assessing the severity of their disease than any scales or tools currently available.
Dave Iverson asked about the benefits of yoga from Danny Bega’s research. He had 20 participants with PD. Half did yoga twice a week for 12 weeks. The other half did conventional resistance exercise (weights). They were looking at effect on both motor & non-motor symptoms. They found benefit in both groups in terms of mobility, as well as non-motor (mood, anxiety, sleep, quality of life).
A viewer asks if it must be a particular type of yoga. Danny Bega says they used and suggests Hatha Yoga because it is easier and can be adapted by using props, chairs, etc. for PD. Don’t use hot yoga because of blood pressure issues in PD causing dizziness or lightheadedness.
Dave Iverson asked Gary Vallat about the importance of activities which encourage personal empowerment and discourage isolation. He does find a personal tendency to withdraw but committing to exercise and social commitments draw him out and keep him engaged in social ways and moving. He also works with a physical therapist and weight training exercise.
Laurie Mischley collected online data from 750 people around the world called CAM care in PD hoping to gather data about the effect of diet, but received many reports of loneliness. People reporting loneliness are those doing worst, symptomatically. Those staying active have a better quality of life. Support groups should be a considered part of the medicine to treat PD.
What should we know about dietary supplements?
* You shouldn’t self-medicate: Talk to a physician or dietitian about supplements you’re interested in.
* It may not be a one-size fits all: Just like traditional medications work differently for people, supplements may have varying levels of benefit.
* There can be side effects to natural medications: Too much of something natural may cause adverse effects.
* Natural supplements may have a place in your treatment regimen: With proper precautions, some additions may be beneficial.
> Case study: Antioxidant coenzyme Q10 showed no clinical benefit in a Phase III study.
CoQ10 was funded because there was a lot of data showing potential benefit. One Phase III study was pulled as non-beneficial, but the methodology should be reviewed and FIA measure of CoQ10 shows 30% of people with PD have deficiency. Among the people deficient, would they benefit from CoQ10?
It seems everything studied for disease modification have failed. Possibly because disease modification trials are restricted to people who are not on dopamine, but if we know the brain needs dopamine it doesn’t make sense to restrict access to something they know is needed for proper function and measuring if something else makes a difference. You can’t keep a boat from sinking if it has a lot of holes in the bottom, by plugging just one hole. Maybe dopamine with CoQ10 would show benefit.
What do we know about nutritional supplements, like vitamins?
We know very little from actual evidence. There is some animal data. Turmeric slows deterioration of cells. Similar things have been shown with coenzyme Q10, vitamin E, and creatine, but there’s a difference between animals and humans, so benefit in humans has been disappointing.
A healthy diet in general but with focus on some of what we know causes PD, like inflammation in parts of the brain, and free radicals that cause cell damage and antioxidants that bind to those and keep them from causing damage. So beneficial fats, colorful vegetables and fruits, but that’s good for everybody.
Can diet impact Parkinson’s?
What do we know about:
* Antioxidants
* Anti-Inflammatory Foods
* Dairy
* Sugar
* Gluten and Carbohydrates
* Spices
* Beans
* Protein
* Fiber
> Speak with your physician or a dietitian before changing your diet.
Gary Vallat is gluten free, sugar restricted, added antioxidant supplements, but doesn’t know what’s helping his PD, but they are healthful.
Danny Bega recommends for everyone staying away from pro-inflammatory foods like simple carbs, red meat, hydrogenated oils. What we don’t know is if that contributes to inflammation causing damage in PD, but it makes sense to reduce those foods in case it does. Reducing those foods is a healthier diet which should increase energy and reduce fatigue, which is a big issue in PD. Not all dairy is bad, but high fat dairy can be inflammatory. Dairy with vitamin D is preventative for fractures in falls.
Laurie Mischley says it is known that fruits, vegetables, fish, and beans that reduce risk of PD, but dairy (not yogurt!) increase risk of PD. Eating dairy will not accelerate PD. The importance of the micro biome and gut health may reduce risk of PD, reduce symptoms in PD, and improve resistance to everyday illness like colds and flu. Feeding your micro biome nutrient dense, plant based foods keeps your micro biome healthy. Also, abdominal obesity and micro glial activation in the brain is easily modifiable by eating nutrient dense foods.
35 years ago PD brain autopsies showed a deficiency in the brain’s main antioxidant, glutathione. Since, we have learned in animal and laboratory models low glutathione leads to mitochondrial dysfunction, free radicals, loss of dopamine, and cell death. Maybe we should be giving people with PD glutathione, but it is not orally available. In 1996 Italy did a small, unblinded study giving intravenous glutathione twice daily for 30 days and found 42% reduction of PD symptoms that lasted a couple months past the last dose. 2009 US researchers tried to duplicate this with minimal effect. Laurie is using intra-nasal glutathione in a current study as cheaper, and easier to administer with good results and some clinical benefit. MJFF is funding 2 follow up studies showing target validation and moving toward phase II trials.
Viewers are asking about fava beans and mucuna (Indian legume) because they contain natural levodopa. Anecdotal reports of improved ‘on’ time after eating fava beans or mucuna. We don’t know much about how well they penetrate into the brain and how to adjust doses as well as conventional levodopa with carbidopa. They have similar side effects (‘on’ dyskenesia) to Sinemet because of the similarity of effective ingredient. With fava beans, especially with a mediterranean lineage, because of fava-ism which is a hemolytic anemia that can be life threatening.
Marijuana benefits to PD? What part? Dosage?
Interestingly, the receptors for cannabis are the 2nd most populated receptors in our brain because we make our own cannabis so the potential for effect on all different parts of our brain is robust, particularly in areas involved in PD and motor symptoms. The question is what other effects would you have on non-motor symptoms, balance, anxiety, etc.
Magnesium?
There as lot of research showing this deficiency is prevalent in America, especially among big coffee and alcohol drinkers. There is a lot of interest in magnesium reducing leg cramping. Magnesium and lithium act similarly in the brain. Lithium is not an FDA nutrient, but humans do need a micro amount, which will also reduce leg cramping.
PD may be, in part, a metabolic disease just like Alzheimer’s is “Type III Diabetes” because the PD brain is not doing an effective job turning glucose into energy. PD is similar when given a bunch of carbs, so eating more healthy fats and proteins makes PD brains more energy productive.
Healthy fats are: coconut oil and olive oil because they are richer in omega 3 fatty acids and phenols. Nuts, avocado, fish/salmon. Stay away from partially hydrogenated, inflammation-causing oils.
Why is Research into these Methods so Difficult?
* Lack of financial incentive for pharmaceutical companies (into coconut oil, for example). $1.4million to bring a product to market, so pharmaceutical companies will not be researching anything that can’t be marketed.
* Competes for limited resources from government and non-profits. Research into non-market-able products and treatments will have to be funded by non-profit dollars.
* Difficulty of randomized, controlled trials for CAM therapies
* High placebo effect
* Can have very individualized regimens and effects
> CAM trials also face many of the same challenges traditional studies do: subject selection, recruitment and retention, compliance with regimen.
Gary Vallat has been keeping track of his symptoms since the beginning. His current chart is every half hour. He’s into this because he doesn’t have an objective measure of changes over any length of time, so having the recorded data gives him accurate information about changes for the better or worse.