Eating Well with PD – Webinar notes

Eating Well with PD – Webinar notes

The Michael J. Fox Foundation offered a webinar on Eating Well with Parkinson’s Disease, featuring a panel of speakers including a doctor, a patient with PD, and two nutritionists. They discussed what makes up a “healthy” diet, what specific diet plans are out there, how to foster a healthy diet in everyday living, ways to adjust diet to accommodate medications and symptoms, and the role of vitamins and supplements. We at Stanford Parkinson’s Community Outreach listened to the webinar and are sharing our notes.  

The speakers on the panel included:

  • Dr. Karen Jaffe, a member of the Michael J. Fox Foundation (MJFF) Patient Council;
  • Sharon Desatnik, a retired physical therapist diagnosed with PD in 2012; 
  • Dr. Puja Agarwal, nutrition epidemiologist with Rush University; and 
  • Christine Ferguson, registered dietician, a doctoral student in nutrition at the University of Alabama.

To watch this webinar and others from MJFF, follow this link to their webinar archive.

One resource mention in the webinar is the MJFF diet guide.  You can download a PDF of the diet guide here.

For additional terrific resources on nutrition and PD — including downloadable guides, links to online resources, and webinars and podcasts — see this page on the Stanford Parkinson’s Community Outreach website.

Now…on to our notes from the webinar.


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Eating Well with Parkinson’s Disease

Webinar presented by the Michael J. Fox Foundation

January 16, 2020

Notes by Lauren Stroshane, Stanford Parkinson’s Community Outreach

What makes up a healthy diet?

A popular way to describe a healthy diet nowadays is “eating the rainbow” – that is, making sure to consume a variety of different colors representing varied fruits, vegetables, whole grains, lean proteins, and healthy fats. Processed, prepackaged foods tend to be less nutritious and healthful.

Antioxidants are molecules that are found in many foods (or can also be artificially produced) that have been found to delay or prevent some types of cell damage. Fruits and vegetables tend to be rich in antioxidants, as are whole grains, nuts, dark chocolate, red wine, coffee, and tea. To read more about antioxidants, visit this Medline Plus article.

Ultimately, we should all try to get the majority of the food we consume from plants, including whole grains. As the food journalist Michael Pollan famously recommends, “Eat food. Not too much. Mostly plants.” In whole wheat, the first ingredient should be some type of whole grain, not just enriched whole wheat flour; an added benefit of whole grains is that they contain lots of fiber, which can be helpful for the constipation and slow transit times often experienced by those with PD. Make sure to increase water intake when increasing fiber, to help your body process the fiber.

Aside from plants, a healthy diet should also incorporate lean proteins, such as from fish, beans or other legumes, and poultry. Healthy fats, such as from fatty fish or olive oil, are also recommended. It is possible for red meats to fit into a healthy diet, but they must be in moderation.

A tip for grocery shopping: mainly shop around the perimeter of the store! The middle aisles tend to contain more processed foods, while the perimeter generally contains produce and protein-containing foods.

Specific diet plans

The panel reviewed some of the main diets that people with PD often try, including the Mediterranean diet, the MIND diet, and the ketogenic diet.

A Mediterranean diet is widely considered among nutritionists to be one of the healthiest approaches to eating, and is the best diet for heart health; research also suggests that it may reduce the risk of developing PD. The Mediterranean diet consists of eating plenty of vegetables, fruits, herbs, nuts, olive oil, beans, fish, whole grains, and red wine (typically one glass per day), as well as moderate amounts of dairy, eggs, and poultry. The Mayo Clinic has an overview of this diet.

The MIND diet is similar to the Mediterranean diet; indeed, it is a hybrid of Mediterranean and DASH diet, emphasizing foods that affect brain health. The MIND diet encourages high intake of vegetables, particularly leafy greens like kale and spinach; berries, such as blueberries and strawberries; dry-roasted or raw nuts, preferably unsalted, as a healthy snack; olive oil as a primary fat; non-meat sources of protein such as fish and legumes; and the occasional glass of red wine. For more on the MIND diet, read the Mayo Clinic’s summary here.

A third diet commonly tried by people with PD is the ketogenic (or “keto”) diet, which aims to shift the body’s metabolism from primarily using carbohydrates to relying on ketone bodies, a type of stored fat. Participants sharply limit their intake of carbs, instead eating a diet high in fat.  It has been touted as a method of weight loss, though it has not yet been thoroughly researched. A downside to the keto diet is that it significantly limits fruits and some vegetables, which can contain carbohydrates; it also tends to be high in saturated fats. The panel speakers encouraged attendees to be cautious with the ketogenic diet, as studies are limited as to its effectiveness and safety in those with PD. For instance, we do not know if this diet can suppress appetite, which could be worrisome for those with PD, who are often at risk for malnutrition and weight loss. Learn more about the pluses and minuses of a ketogenic diet from Harvard Health Publishing.

Balancing diet and daily life

It’s important to realize that you will encounter bumps in the road while trying to maintain a healthy lifestyle; travel, celebrations, injury, stress, and other priorities can shift you off track. What matters is doing your best to maintain a healthy diet as part of your lifestyle, that way, you will be able to get back to your healthy habits even when there are interruptions.

The panelists had a number of suggestions for helping yourself to succeed in maintaining a healthy diet:

  • Make small changes – one at a time. Too many changes at once can be overwhelming and difficult to maintain. If any of the foods are not working for your body, it can be difficult to know which one. 
  • Track your symptoms so that you notice changes over time. There are lots of different phone applications out there (such as the APDA symptom tracker app, or you can keep a written journal for yourself.
  • Use strategies to remove barriers for yourself. Ordering groceries online for delivery or prepping ingredients ahead of time to streamline the cooking process can be helpful.
  • Balance exercise and diet. Make sure you build regular exercise into your routine as well, and ensure you are getting enough calories given what you burn during workouts.

Adjusting diet around medications and symptoms

As many PD patients are aware, levodopa, the principal medication in many patients’ PD management, can bind with protein in the gut, rendering the medication ineffective. It can feel as if you skipped taking your medication, because your body didn’t absorb it. For this reason, patients are often counseled to avoid taking their medication with a protein-rich meal, and to time the dose at least 30-60 minutes before eating protein.

For those suffering from constipation, a very common symptom in PD, increasing intake of fluids and dietary fiber can help the gut become more regular.

For patients who experience low blood pressure (BP), increasing fluid and salt in the diet can help the body maintain a healthy BP. However, it is important to discuss this with your doctor first, especially if you have any heart or kidney conditions that could make this risky.

For individuals who have difficulty swallowing, sometimes taking smaller bites, eating at a slower pace, and tucking the chin when swallowing can help.

The role of vitamins and supplements

Many people with PD opt to take dietary supplements such as CoQ-10 or inosine. However, it is important to know that there have not been any trials of dietary supplements that have shown effectiveness in slowing or treating the progression of PD. It is definitely not worth straining your finances to afford supplements without scientific evidence that they are beneficial for PD.

It is also important to discuss any vitamin or supplement that you are thinking of starting with your doctor beforehand; sometimes there can be interactions with your existing medications, or the potential to worsen symptoms. For those who have a demonstrated vitamin deficiency and whose doctor recommends that they supplement to increase their levels, of course you should follow these recommendations.

Question and Answer Session

Q: People come in all shapes and sizes; what is a reliable source to know how much of these components I need to eat as an individual?

A: The Michael J. Fox diet guide is available for free PDF download and can be a good place to start.

Most importantly, try to find a registered dietician in your area who can work with you to create an individualized plan. Sharon, the panelist who has PD, started seeing a dietician out of a desire to feel better, help manage her PD, and lose some weight. Her dietician created a program for her and helped her get set up with a symptom tracker. She started to notice improvement in about a month of starting the program.

Q: Should I take fava beans, and how much?

A: Fava beans contain some of the same chemical as levodopa, so some people with PD decide to eat fava beans as a “natural” treatment. The issue is that this effect of fava beans has not yet been well studied, and there is potential for interactions between fava beans and levodopa: it could make your medication more or less effective. For that reason, the panel recommended caution if you are taking levodopa and decide to eat fava beans.

Q: Do you recommend other types of diets, such as intermittent fasting or eating gluten-free?  

A: Gluten-free diets are intended for people with celiac disease; there are hints that there may be gluten sensitivities among people but this is currently unknown. It is pretty common that some people report feeling better when they cut out gluten from their diet, but this is anecdotal, may be at least partly due to the placebo effect, and may also be due to cutting out some of the processed foods they ate before. Nothing currently in the literature indicates gluten has any effect on PD.

Intermittent fasting refers to eating in smaller windows of time during the day, i.e., 12pm-5pm, or 11am-4pm. While this has been studied for weight loss, and shows some promise, it is difficult to sustain long-term. It is hard to say how intermittent fasting could affect those with PD, and those with PD tend to struggle with malnutrition, so a diet which promotes weight loss could be harmful. However, intermittent fasting could theoretically be beneficial for those who struggle with protein interactions with their levodopa, to separate their dose times from their meals. Additionally, those with any blood sugar issues, such as diabetes, would not do well on an intermittent fasting diet.

The panelists recommend learning about  intuitive eating and listening to your body’s hunger cues. For more information on intuitive eating, visit here.

Q: How do you address your sweet tooth?

A: Sharon, the panelist with PD, really struggled with this when she first started seeing her dietician and making dietary changes. What helped her was substituting processed sugar with naturally sweet foods, such as fruit. The less she eats processed sugar, the less she craves it. She also takes apple cider vinegar, prebiotics, and probiotics. Once she started eating better, she started feeling better, and was more able to make the association between the two.

Q: How much red wine would I need to drink to get the benefits?

A: One 5 oz glass per day of red wine is the recommendation.

Q: How to get back on track if you suffer a setback?

A: Sharon spoke about her challenges with “falling off the wagon” when she fractured her pelvis. It became extremely difficult to cook for herself, and she couldn’t exercise. Once she was able, she found some degree of peer pressure from her friends and husband to get back into her healthy habits was helpful. She also finds working out with others to be very motivating.

Q: Is there any nutritional difference between fresh or frozen produce, and organic or conventional?

A: For frozen produce, as long as the food is frozen without any added sauces, oils, or seasonings, then freezing actually retains the antioxidants even better than fresh produce. Look for fruits or vegetables that are frozen without anything extra added.

When choosing whether to buy organic or conventional (produced using pesticides) produce, opt for organic if you have the option in terms of availability and cost. There have been some studies showing an association between pesticide consumption and PD; we don’t know if pesticides in food actually cause PD, or if there is merely an association in the data. The nonprofit organization the Environmental Working Group has a handy resources to learn more about which foods are most important to buy organic, if you can, called the “dirty dozen”.

The most important thing is to consume fruits and vegetables, so if it is a choice between buying conventional produce or nothing, definitely go with conventional.

Q: Is there any nutritional difference between animal vs. plant protein?

A: Plants have a lot less protein than animal products, and they also give you lots of vitamins, minerals, fiber, and antioxidants that meat does not provide. If you need to gain weight, or are trying not to lose weight, taking in enough protein is important, so you might need to consume some animal protein to help with this. If that is the case, speak with a registered dietician to see what they recommend for your specific needs.

Q: Do other formulations of levodopa besides Sinemet also interact with protein?

A: Yes. The protein binding applies to all forms of levodopa, including Sinemet, Rytary, Duopa, Ingrezza, etc.

Q: How do the dieticians on the panel feel about dairy?

A: Christine generally does not recommend cutting out entire food groups, and recognizes that calcium is really important for those with PD, because of the increased risk for osteoporosis and vitamin D deficiency. There is research currently being done with dairy and PD specifically, but the results are not yet conclusive.

If you reduce your dairy intake, it’s important to get plenty of calcium elsewhere, such as with spinach.

Q: How to address constipation with diet?

A: Increase your dietary fiber and hydration – the fiber won’t work without plenty of water in your gut to bulk the stool! Oatmeal can be helpful. Prebiotics and probiotics are best consumed in food, if you are able, rather than from taking supplements; fermented foods such as yogurt that contains live cultures, kombucha, kefir, and kimchi can be helpful. Physical activity is also an important factor in keeping your gut moving healthfully, and helps to keep things moving.

Q: How to combat weight loss and malnutrition in PD?

A: Pay attention to what you’re eating; keep a food log / diary to assess how much you are actually consuming. Consume calorie-dense foods first, before the lower-calorie foods like lettuce or celery. High fat foods make you feel full quicker. If you’re having problems with unintentional weight loss, consume more protein. Cook in a strategic way to add more calories, for instance, by adding broth, milk, or butter if you are cooking rice. In coffee, add some protein powder or cream.

It’s good to be physically active, but keep in mind it will increase your caloric needs. Adding snacks in between meals can be helpful as well.

Q: Do you recommend routinely taking oral supplements for vitamins & minerals?

A: The best way to supplement vitamins and minerals is to consume foods that contain those nutrients. If you are deficient in anything, then you may need to supplement orally; otherwise, it is best to eat foods containing those foods that are rich in vitamins and minerals. Harvard Health Publishing has a handy reference article detailing this.  

Food is complex; the way we absorb and process foods is different than the way we process oral supplements. There is also the potential for pills to interact with your PD meds. At the end of the day, everybody is different! Registered dieticians are trained to help you individualize your diet practices.

Q: Is it important that I see a dietician who has experience with PD?

A: If you see an RD who has worked with PD patients before, that is great, but it is not essential. The main dietary issues that tend to come up in PD – constipation and Mediterranean or MIND diets – are common topics that every RD should be familiar with.

Q: Where to begin if I want to take more ownership over my diet?  

  1. Try to see a dietician, if there is one in your area! Even just one or two sessions can help you to have a plan for where to start.
  2. Start using a symptom tracker to monitor how you are feeling.
  3. Start keeping a food diary to monitor what you are eating.
  4. Make one change at a time; don’t feel like you have to fix everything at once. 
  5. Set some goals for yourself. What do you want to get out of this?
  6. Be patient; it may take weeks or months to see a significant difference in how you feel.