For the first 7 years of being diagnosed with Parkinson’s disease, I didn’t see a need, nor did I have a strong desire to join a Parkinson’s disease support group. When I moved to the suburbs, my neurologist, at the time, encouraged me to see what support groups could offer. After attending meetings of a few support groups, my wife, Angela, and I envisioned what we wanted in a group. In a very short period, I went from avoiding Parkinson’s support groups to speaking at them and even starting one of my own. My wife and I ran our support group for a dozen years. I learned so much from so many amazing people. As much as I thought that I didn’t need a support group, it turned out, that I really did.
The reality is that a well-run support group offers camaraderie, information, and a wisdom that comes from so many, all in one place. A support group can show you what is working and what to avoid, doctor information and feedback, available classes that pertain to Parkinson’s, local therapists, caregiver support, Parkinson’s news, and speakers in your area. When you find a good group, it feels like another family and a place that you belong. A strong network of family and friends is crucial to your health and wellness, no matter what the illness.
Some support groups may not match your personality or may not be the kind of group that you feel comfortable with, right now. I wanted a group that focused on the sharing of information and left me more empowered than when I came in. We made a lot of friends, shared both the good times and the rocky times, and provided one-another moral support. Despite our age differences and unique situations, we all learned together and bonded together into a cohesive unit for most of the group’s longevity.
We Are All In This Together
Knowing that you aren’t alone, is so important. Something as small as telling someone that you are thinking of them or that they matter to you can save another’s life. Knowing that people are thinking about you and caring about you is so empowering. Just a simple quick text, an email, a phone call, or a good old-fashioned greeting card can make a huge impact.
Care-giving has its stressful moments. We all need a break. Taking time for ourselves is not selfish-it’s a precious necessity. Your self-care makes you a healthier more helpful contributor.
Helping Ourselves Helps Those Close To Us
Patient or caregiver, there is no shame in admitting that you need help. It takes a strong person to go outside his or her comfort zone. Tell someone close to you what you are feeling and to let them find assistance for you.
I am not an expert on mental health nor am I a doctor. This is not medical advice; it is only what I have seen for over the 30 plus years of having Parkinson’s disease. I have observed friends struggle, who may have benefited from this kind of help. If you see a friend in need, reach out and offer that help. You may be saving a life.
National Suicide Prevention Lifeline is 800-273-8255 or 988 in the USA. Go to https://en.wikipedia.org/wiki/List_of_suicide_crisis_lines for an international list of hotlines.
Those of us living with Parkinson’s disease and have a caregiver or care partner to assist us, may overlook or take our helpers for granted. Take the time to show your love and gratitude for all that your caregivers do for you. Show your support and make them aware of your appreciation and the changes that they make in your life. This is a thank you to all those selfless people who make life easier for those who need assistance.
Here are some tips for you and your carepartner/caregiver:
- Caring-Taking care of another can be a rewarding and spiritual adventure that can bring our relationships closer. In any relationship, there are caregiving challenges that will require patience, understanding, compassion, empathy, and possibly, even more patience.
- Stay Vigilant-You, the caregiver, are the cheerleader, coach, and trainer, all in one, for a team that may or may not show up. It is your responsibility, as a caring helper to be observant and to ensure that you not over tax yourself. You must see that you take respites and time for self-refreshment.
- Appreciation-My wife, Angela, is the most caring, most selfless, most generous, and most thoughtful person that I have ever met. Acknowledge and do your best in thanking those making a difference in your life. It’s so vital that those caring for us know that they are valued.
- Limits-If carepartners fail to monitor and maintain their own health, it is vital that those who care about them step up and say something.
- Watch for Burnout-Continuously caring for another takes a toll on body, mind, and spirit. If a caregiver overextends themselves, they are likely to face health, sleep, and stress related illnesses.
- Self-Care-Caretaking for yourself, even for a small part of your day can be calming, centering and help to keep you healthy. Keeping your identity and getting time for yourself is a health must for you and those around you. Just a few minutes a day can rejuvenate the entire body.
- Taking Your Time-Pay close attention to any changes in how you interact and communicate. If you find yourself on edge, quick to react, and overly sensitive or emotional, take a few moments to scan yourself and the situation. Just finding a quiet spot like an office nook to try some deep relaxing breathing may quiet things down.
- Knowing your Limits-This requires knowing one’s self. Monitoring your condition is as important as the patient’s status. As a team, if the caregiver can function well, the patient sees those benefits as well. Taking care of yourself is the best gift that you can give to those that you love.
It’s hard to take care of others well, if you aren’t well. Take care of yourself and thank you!
Today, 9-11, marks an historic and tragic event that not only shook America but the entire World. The attacks of the World Trade Center, the Pentagon, and Shanksville, PA impacted the World, changing everyone’s lives. This day will forever commemorate the lives lost that tragic day and the heroism of the men and women who met the challenge of saving lives while risking their own. For a very brief period, I saw something that I had never truly witnessed, experienced, and appreciated.
On the frenzied morning of the fall of the Twin Towers, my wife and I were stranded in Atlanta where rental cars were nearly unattainable. Planes were grounded and we needed to get back to the DC area. The country seemed under attack and we were acutely alert, vigilant, and nearly paranoid–but, something beautiful rose out of the fear and chaos.
For about three weeks or so, a warm and loving blanket of compassion covered much of the World as citizens gave of themselves. In this time of immediate need, when so many were in shambles, volunteers ran to assist in various ways, just to be kind and of service. This is the best part of humanity–the caring, giving, sharing, and loving part that unites our citizen’s eternal hope and fortitude.
The acts of kindness like receiving a much needed rental car from someone that we barely knew, so that we could get closer to home, renewed our faith in doing good.The coming together and generosity reminded me that goodness still existed. An horrific event that took so many innocent lives brought us all together. I treasure the wonderful camaraderie of pride and love for humanity that shone for that gorgeous but ever so brief moment in time.
I have hobbies: I write, I read, I travel, I photograph, I do Reiki, and I collect shark’s teeth. Shark’s teeth are elegant, silky, shiny and smooth. They come in all shapes, sizes, colors, textures, and tones. Just like people with Parkinson’s disease, all the teeth are totally unique and full of character. The teeth are technically a waste product of discarded chompers that are fossilized over long periods of time. Some are black, brown, gray, speckled, multi-toned, sharp, dull, serrated, or pointed.
I can’t explain the connection that I have to these tiny but beautiful pieces of art. Nature and time have created a cornucopia of remarkable masterpieces. Some pieces are almost gem-like, worthy of display and adornment. Often, their beauty is overlooked, underappreciated, and cast aside because beachcombers fail to recognize what is right in front of them. They fail to identify the magnificence and uniqueness of the diversity of each and every piece. The teeth are results of wear and tear from years of natural forces, while being tumbled through swirling water and abrasive sand. The varieties of sharks combined with the range of conditions affecting the teeth, create a product that is easily underappreciated and often overlooked.
Diversity, it is to be respected and upheld, for without diversity, the world would be boring and tasteless. The splash of colors and striations throughout some of the teeth are due to minerals and variations from the water’s varying pH level. These imperfections in the teeth, add beauty and character, plus they make each tooth memorable and one of a kind.
It takes a fresh perspective to look at something so common, with new eyes. We must look deep and see what is there and not be influenced by what others may want us to see. Some will try to influence what we see. Most of us know what is right and what is wrong. Appreciating these teeth took realization and a level of understanding. I see their beauty even if some do not.
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.