One question that get all the time, is how to manage their diet with medications, protein, and their Parkinson’s symptoms. Today, I am thrilled to bring you someone who knows Parkinson’s disease, was a registered dietitian, has written and advised extensively on the subject of Parkinson’s and diet (I am vegetarian and some of the following recipes are my guest’s suggestion), and now, will share her knowledge with you! I am so excited to present my interview with Kathrynne Holden:
Question 1: What pointed your focus in nutrition to Parkinson’s? Was it a personal focus for a loved one or a need that you saw that had to be addressed?
I discovered a need that had to be addressed. In university, we studied medical nutrition therapy for heart disease, cancer, diabetes, stroke, and many other conditions; also food-medication interactions, of great importance for dietitians. After graduation I offered free counseling at our senior center, and a gentleman asked if there was any special diet for Parkinson’s disease. In seven years of study I had never heard of Parkinson’s disease, so I said I would do some research and get back to him. What I learned on Medline was staggering. There was a vast array of nutritional obstacles, including a major food-medication interaction: levodopa and protein. Yet there were no nutritional guidelines, either for patients or health professionals. I determined to narrow my focus to Parkinson’s disease alone. In the process, I coauthored research, wrote two manuals for dietitians as well as books for people with Parkinson’s and their families, and contributed to two physician’s manuals on Parkinson’s. Currently several of us are petitioning our parent organization, the Academy of Nutrition and Dietetics, to include Parkinson’s Disease as a condition requiring nutrition therapy. If successful, insurance coverage might be a result as well.
Question 2: What should every person with PD know about diet and this illness?
Karl: Maybe, you can list a few suggestions. For me, I noticed that my meds efficacy and my digestion improved from being a long-time vegetarian. I discovered that my pills activated faster when I took them with caffeine and that Not until I visited Hawaii did I find out that Macadamia nuts were a natural laxative. These were helpful tidbits that I had to find on my own.
Kathrynne: Karl, you’ve hit on one of the most important points. Medication effectiveness, digestion, and constipation are concerns for almost everyone. But the solutions can be quite different from one person to the next. And no one knows you as well as you do, so it’s important to be your own detective, and learn what works best for you. But here are some points to consider.
For constipation, besides fluids and a high-fiber diet, some foods that can help include, as you note, macadamia nuts, kiwifruit, cashew nuts, cooked prunes, beets, flax seed, whole grains, and well-soaked chia seeds. You’ll need to experiment to find what works best for you.
For those using levodopa, some people report that taking it with a carbonated drink such as seltzer water speeds its absorption.
It’s also important to take levodopa 30 minutes before meals containing protein, so it can dissolve and enter the small intestine for quick absorption. Do not take it with, or right after, meals, because the stomach hasn’t emptied and the levodopa can’t pass through to the small intestine. Also, because Parkinson’s can slow the motion of the gastrointestinal tract, it can take 90 minutes or longer for the stomach to empty. If it doesn’t seem like your levodopa is effective, it may be due to slowed stomach emptying, a question to discuss with your doctor.
Also, when timing of meals and levodopa is complicated it can help to use quick-absorbing “liquid levodopa.” The Parkinson Foundation has instructions for making it. Go to Parkinson’s Disease Medications: https://f5h3y5n7.stackpathcdn.com/sites/default/files/attachments/Medications.pdf On page 73 find the “Formula for Liquid Sinemet.”
Question 3: We are all very different in our symptoms, medicines, and stages of illness but is there a universal truth that can benefit all our diets?
Yes. It’s important to realize the value of whole foods, as opposed to vitamin and mineral supplements. Parkinson’s is a stressful condition, and stress, along with other conditions, creates “free radicals” – very reactive particles that cause damage in the body and brain. But antioxidants stabilize free radicals, making them harmless.
Foods are a much better source of antioxidants than supplements, because foods contain substances that support each other and make the antioxidant more effective. For example, a Brazil nut contains vitamin E, which you can also get from a pill. But the Brazil nut contains the entire array of tocopherols and tocotrienols that make up vitamin E, and it also contains selenium, an antioxidant mineral that works with vitamin E, forming an antioxidant combination much more powerful than either one alone.
Vegetables, fruits, and nuts are rich in antioxidants, as well as fibers that both help prevent constipation and serve as food for our “friendly bacteria” known as the microbiome. Some good examples are berries, grapes, plums both fresh and dried (prunes), carrots, beets, blue corn, broccoli, pecans, bell peppers. Another excellent food is fatty fish, such as salmon, for omega-3 fatty acids that benefit the brain.
Here are links to recipes using some of these foods, by George Mateljian, whose work in nutrition is excellent, I’m a great fan:
Sautéed Vegetables with Cashews
Super Carrot Raisin Salad
5- Minute Blueberries with Yogurt
5-Minute “Quick Broiled” Salmon
Question 4: It is believed that Parkinson’s disease begins in the gut. Have you seen diet make an impact on your client’s symptoms as well as progression?
It seems likely that PD may begin in the gut via the vagus nerve, which is a pathway from the digestive tract to the brain. In an analysis, researchers found that individuals whose vagus nerve was severed were at a much lower risk for developing PD. But scientists believe that there are likely to be other causes besides the gut-brain pathway. Some also theorize that unhealthy gut microbes may communicate to the brain by way of the vagus nerve, and that maintaining a healthy microbiome might lower risk of PD.
Regarding diet’s impact on PD, yes. Persons with PD who turn to wholesome, nourishing foods, have offered such comments as “digestion has improved,” “PD symptoms have lessened,” “depression has lifted.” It appears that with a good diet, medications can be more effective, and there is a general sense of improved well-being.
It’s possible that this could be due to nourishing the gut microbiome – the colony of microorganisms that live in our gastrointestinal tract. We now know that dietary fibers are food for these beneficial microbes, keeping them in good health. They can then communicate with our DNA to influence our health. A healthy microbiome appears to help prevent the inflammatory bowel disease and irritable bowel syndrome that so often plague people with PD. It fights cancer, and may be a factor in preventing some types of depression. Some strains produce a dopamine byproduct that is associated with better mental health.
But they need to be fed the proper food – dietary fiber – in order to do their work. That’s why whole grains, vegetables, and fruits are so important, and why refined flour and sugar and highly-processed foods are so harmful – they leave nothing for the microbiome to feed on. I recommend eating a variety of whole grains, vegetables, and fruits, because each has different fibers, and the various types of microbes each need their own kind of fiber.
Question 5: What should we be avoiding in our diets to get the most from our food and to assist our medications?
I would avoid what I call “anti-foods” – those that are made from refined, highly-processed ingredients like white flour and sugar, hydrogenated fats, and artificial colorings and flavorings. Many of the ready-to-eat frozen meals and canned soups fall into this category.
Also, as much as possible I would avoid produce grown with herbicides and pesticides in favor of organically-grown produce. There is a growing association between pesticide and herbicide use and risk for Parkinson’s disease. Organic foods are often more expensive, but the Environmental Working Group posts a list of foods that are the most and least contaminated. See their website: https://www.ewg.org/foodnews/summary.php Good food will never let you down.
My thanks to Kathrynne Holden for making this interview possible. I am very appreciative that she shared so much great information on diet and Parkinson’s disease with us! I hope you find this interview helpful. Eat Well!
Kathrynne Holden, MS, RD (retired) is author of “Eat Well, Stay Well with Parkinson’s Disease,” “Cook Well, Stay Well with Parkinson’s Disease” and “Parkinson’s Disease and Constipation (CD)” See her blog at nutritionucanlivewith.com for more on nutrition for Parkinson’s disease.
Dyskinesia is the uncontrollable jerky movement of hands, feet, or head. Often misunderstood, dyskinesia is a side effect of the Parkinson’s disease medication. Sometimes, this side effect is embarrassing, annoying, and at times even dangerous. Besides drawing attention to you from complete body writhing, dyskinesia can be exhausting. When I experienced 1 to 2 hour episodes of dyskinesia, I would feel like I ran a marathon without ever leaving home. Small spaces, sharp edges, and anything glass or breakable was a potential hazard. Trying to hold a drink with dyskinesia is a struggle, as your hand wants to splatter everything in sight but your mind screams, “Don’t do it!”
Tremor and dyskinesia are different. Unlike tremor, dyskinesia is bigger than a rapid twitch or tremble. At times, my entire body wiggled and flailed. It still happens, but only on an infrequent basis. Dyskinesia interferes with delicate and precise movements as well as simple everyday tasks, like making a sandwich, pouring a drink, or slicing bread. Someone with dyskinesia may struggle to brush their teeth, comb their hair, or just perform normal acts of daily living. Constant care and awareness is heightened to avoid food from flying everywhere.
People who don’t know me that well, who may see a brief shake, may laughingly call it a “dance”. Calling dyskinesia a dance may be meant to lighten the severity and discomfort of the event for all involved. Dancing is by choice—dyskinesia is not. I tolerate this comment but admittedly wish that those calling dyskinesia a dance could refrain from reducing a drug interaction that affects so many, to a recreational act. Dyskinesia in public is a teachable moment! Explaining to the uninitiated that this isn’t part of the illness of Parkinson’s has been a constant challenge.
Understanding dyskinesia from the non-scientific perspective isn’t that complicated, but trying to negotiate it, reduce it, and calm it, is the hard part. Never knowing when or where it might crop up can keep you on edge. It adds more stress—not what you need! Over time, I have gotten better about finding some control with the help of meditation, yoga, breathing, and reiki.
I realize that the distinction between tremor and dyskinesia probably in the scheme of things isn’t all that crucial, but what is important is the way either symptom is accepted by the public. Educating the public and demystifying the nuances of Parkinson’s can bridge the gap and clarify just what the public should understand about symptoms and side effects related to Parkinson’s disease.
I’m concerned when I hear of drug companies and medical procedures that claim that their drug or procedure works but they can’t explain why. I often second-guess my doctors and rightly so. I have seen it pay off for me. I don’t suggest it for everyone, but with over 20 years of being in the Parkinson’s Disease arena, I know enough to be dangerous. Let’s add a little more salt to the pot. Why not try this or add that? Have you considered this? Options can benefit you or have consequences.
I am not a chemistry experiment for the medical community to tweak and tinker with like some weekend mechanic’s car restoration project. Physicians have a responsibility to understand the consequences of the drugs that they are prescribing but when the drug maker doesn’t truly understand the drug how can the doctor account for your reaction? I had a good thing going and I was pretty stable with my meds. For the past few weeks, dyskinesias (uncontrollable movements due to too much dopamine)(at least that is the best guess for causes dyskinesia) have been getting longer and more severe, after trying this new medicine.
For the last 8 years with the assistance of my neurologist, I have remained stable. I have been fortunate that I have been able to pretty much keep my progression in check. My medications were working and mostly doing the job. I was noticing that my meds were wearing off slightly and that my on-time wasn’t lasting as long as I would like. It’s no surprise that your drugs aren’t always going to work at maximum benefit and time for a change may come. My doctor suggested that I try Zelapar, a drug I wish I had understood better before I tried it.
March 29th began with the first dosage of Zelapar(selegiline hydrochloride) an Orally Disintegrating Tablet. The pill is a disgusting bitter tasting quasi-grapefruit flavored pill laced with a derivative of a chemical artificial sweetener and gelatin. The shiny happy yellow pill reminds me of a jaundiced VW bug. Anyone who knows me knows that I am Vegetarian and that I avoid chemicals as much as possible. I admit to eating junk on occasion but overall, I would think a drug maker would avoid a mind-altering-fake-sweetener and gelatin.
Had I known what I know now, I never would have touched this stuff. The 29th was a Monday. I read the pill instructions and as ordered I let the putrid tasting disintegrating pill dissolve on my tongue 5 minutes or more before consuming water or food. The pill is meant to be a convenient once-a-day agonist. It’s so convenient that according to the drug paperwork it may stay in your system 5-7 days (or longer from personal experience) even after the drug is discontinued.
The Zelapar (1.25 mg, introductory dose) worked almost instantly. A strange inexplicable sensation of some brain activation was triggered. I’ll admit, the first day wasn’t too bad as I saw a drug longevity that I haven’t seen for years. In spite of some mild dyskinesias (uncontrollable movement that I had finally gotten mostly under control), my meds worked, I was able to eat protein without ruining Sinemet absorption and stay physically active. My motion appeared fluid and my energy seemed surprisingly out of the ordinary. I overlooked the negative side-effects and was hopeful that my system was going to get used to this new drug.
Day 2 of Zelapar showed signs of more uncontrollable moving and for longer time periods. Uncontrollable movement that were lasting for 15-20 minute periods from day 1 of Zelapar was now lasting for 30-45 minutes once or twice during the day. Now, I was skeptical yet still hopeful that I could pull through this mysterious dilemma.
When Wednesday, March 31st came (Day 3), I was really hoping that I wasn’t going to regret making the change. If you dare to read the fine print that comes in the box, there is reason for concern, in my humble opinion: This is from the makers of Zelapar: The decision to prescribe ZELAPAR should take into consideration that the MAO system of enzymes is complex and incompletely understood and there is only a limited amount of carefully documented clinical experience with ZELAPAR. Consequently, the full spectrum of possible responses to ZELAPAR may not have been observed in pre-marketing evaluation of the drug. It is advisable, therefore, to observe patients closely for atypical responses.
What the hell? Are they kidding me? I love this phrase! Oh, it’s complex so we can’t really tell you what is really happening because we don’t understand because we don’t have enough data to tell you what to expect—Have A Nice Day. I added the Have A Nice Day—they didn’t actually infer it, but that’s the real English in a nutshell! As much as these drug companies claim to know they really don’t know. What does this mean? What it means to me is that I have to not forget to stay vigilant, cautious, and always remain my own best advocate. Some drugs may help while others will hinder and some are just a complete risk. Stay tuned for an update as the saga continues.
Keep in mind that what works for some of us may not work for others. This is all my personal experience and I am not a doctor.