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An Informative Interview with Retired Dietitian, Kathrynne Holden

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

http://whfoods.org/genpage.php?tname=recipe&dbid=229&utm_source=daily_click&utm_medium=email&utm_campaign=daily_email

Super Carrot Raisin Salad

http://whfoods.org/genpage.php?tname=recipe&dbid=164&utm_source=daily_click&utm_medium=email&utm_campaign=daily_email

Kiwi Salad

http://whfoods.org/genpage.php?tname=recipe&dbid=190&utm_source=daily_click&utm_medium=email&utm_campaign=daily_email

5- Minute Blueberries with Yogurt

http://whfoods.org/genpage.php?tname=recipe&dbid=286

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.

Parkinson’s Disease Awareness Month 2019

2019 Parkinsons awareness month shirt 1

Parkinson’s Disease Awareness – Together WE are ONE

The month of April is upon us and this means a month of Parkinson’s awareness! There is an array of events, fundraisers, lectures, walks, and more that are planned for April, around the world. If you or someone that you care about is looking for an event in your area, you may want to Google:  local Parkinson’s events in my area, or visit your favorite Parkinson’s organization/charity website to see what they have going on, or consult your local support groups, hospitals, clinics, to see what you might attend locally.

We have updated our events page on this website for the speaking engagements that Angela and I will be presenting this month. If you are in the Northern Virginia area and have an interest in hearing us talk, please visit the 2019 upcoming events page and see what talk you think might interest you. We look forward to seeing you at one of the events on our list of future events!

Watch for more upcoming events and updates! You may want to subscribe to our site, to get the latest post fresh off the press.


In my 30 plus years of dealing with Parkinson’s disease and attending numerous events, conferences, walks, lectures, World PD Congresses, I have amassed an extraordinary collection of Parkinson’s disease related tee shirts which I will commemorate and share with you this April. This first tee shirt is sort of a mystery, but I believe it was created by my dear friend and Parkinson’s advocate, the late James Trussell. He was a dear friend and is greatly missed. He gave so much to the Parkinson’s community!

The shirt speaks of unity and strength–what a perfect message to start Parkinson’s Disease Awareness Month!

Watch for more tee shirts from my collection, this month!

Farewell and Thanks to Stan Lee!

Heroes come in and out of our lives, often unrecognized and frequently under appreciated. On Monday, it struck me just how important heroes are and the amazing power that comes in looking up to a higher standard. Heroes make us better people. They give us something to aspire to and to be. Heroes inspire us to be more and to achieve more than we might, without them.

I was so struck with shock and sadness to learn of the death of Marvel Comics’ founder and genius, Stan Lee. His biography is almost as amazing as the prolific cadre of characters that he brought to life. There is no repaying the numerous gifts that he has given us, as well as the hours and hours of pleasure, excitement, and joy. As a lover of anything and everything Spider-Man, I would religiously watch those cartoons every weekday at 3: 00.PM, after school.

Spider-Man didn’t ask to be given his special abilities, they were thrust upon him and he made the most of what he could do with his unique gifts. Those of us who have Parkinson’s are in a not so different place, in that having this illness makes one hone, uncover, and expand our own powers. We didn’t ask for Parkinson’s disease to come in to our world, but just like Peter Parker, we incorporate those dramatic alterations and deal with them to the best of our abilities.

I have seen Parkinson’s bring out the best in many people. This illness, as awful as it is, can reveal sides of people that you’ve never seen before. From creativity, to artistic ability, to writing or other revealing abilities, sometimes, out of hardship comes new talents and new strengths.

I didn’t know early in my life that I was going to write books and blogs on Parkinson’s disease. It was Parkinson’s disease that caused me to share my journey of over thirty years with those who may be wondering how to navigate the terrain that I have already walked on. Like, Peter Parker, I have learned and adapted.

Heroes keep us upright and moving forward. They remind us that there is still good in the world, when we need it most. Stan Lee’s iconic heroes will most likely never be duplicated, but thankfully, his gifts of brilliance will live on and on.

My Halloween Observation!

Happy Halloween!

It’s that perpetual question that haunts us all at this time of year. Family dinner tables and rows of bars will be bantering about this Halloween conundrum that puzzles so many of us, this very special time of year. I’m sure this debate follows you everywhere as it does for all of us intellectuals! If Michael Myers and Jason Voorhees were to square off, who would win? Jason, the expressive hockey lover and Michael, the melanin deficient butcher knife wielder, who just like Jason, are angry with the world. Hello!

Both gentlemen are so needy. They ruin young love and have a bad habit of showing up where they are not invited. The boys tend to be high on the violent spectrum of the scale.

It’s difficult to be misunderstood and under appreciated. These young men are products of households deficient in solid role models and proper shop class direction. If only someone had explained how household utensils were meant to be used! Maybe they are just overachievers in their field but very poor communicators, making their popularity low on the party scale.

I would say that these iconic pillars of horror flicks have more in common than that which sets them apart. They are good at scaring us.

Happy Halloween!

Being Malleable Opens Potential Benefit!

Rigidity in thought and body may go hand in hand. Rigidity can be many people’s main complaint when they are first diagnosed with Parkinson’s disease. Keeping active, moving, exercise, and stretching are just a few of the tools to keep in mind when your body starts to stiffen up.

As we age, it gets easier and easier to become so convinced that there is only one way to do something. When we get to this mentality that there is only one correct answer, we may be shorting ourselves of new pathways and seeking new alternatives. The sooner that we accept the way we used to do a certain task may have changed, the sooner we can create a plan to identify and try a new method. Flexibility in body, mind, and attitude are necessary when considering what it is you want to tweak with your illness. Sometimes, it may take a slight increase in medication to improve your on-time and reduce symptoms of the disease. Sometimes, thinking outside the usual structure of traditional medicine can be fruitful.

Had I not incorporated reiki, massage, meditation, qigong, yoga, exercise, and reflexology, all in to my life, I honestly don’t know where I’d be. I can tell you this, at first, I was not a believer. It took a leap of faith and necessity to get there. Had I not gone outside my comfort zone, I would never have benefited from these various therapies

For those who question the true benefits of complementary therapies, I ask this: Don’t you think that these therapies might have some merit if they’ve been around for hundreds to thousands of years? Is skepticism holding you back from trying something new? Is it time? Is it money? What holds you back from exploring new options of helping yourself?

Adding a new practice, therapy, or routine to your health regimen takes some investigation, research, and commitment. Keeping positive and remaining hopeful are beneficial in whatever you choose to try.

Depending upon your choice of therapy, it may be important to confirm with your physician, neurologist, or specialist, just to be safe. I am not a doctor! I am a Parkinson’s patient of over 30 years that can declare benefit and relief from these therapies.

Here are some online live events you should catch this week!

From IStockPhoto

Be sure to attend the first live online Davis Phinney Foundation Victory Summit this Friday 8/10/18 at 10 AM PST or 1:00 PM EST! I have attended several of their summits and found them to be very educational and informative. Use this link to register today: https://www.davisphinneyfoundation.org/live-broadcast-registration/


This Saturday,8/11/18 join the Parkinson Voice Project for an online lecture from Sarah King, PT, DPT who will be discussing “How To Create Your Personalized Parkinson’s Plan of Attack“. Learn about this lecture and more speakers in their ongoing lecture series. The lecture begins at 10:30 AM Central Time or 11:30 AM Eastern Time. Here’s how to register and learn more about the lecture series: http://www.parkinsonvoiceproject.org/ShowContent.aspx?i=2141

Summer Reprise – Tips for Staying Positive and Proactive

This was created in May 2014, but I thought it was worthy of another appearance.

Mountain PeaksHere are some Tips for Staying Positive and Proactive:

  • Take care of yourself. The more you know about Parkinson’s, the better. You play the key role in your own health. Seek out therapies/modalities that work for you. Accepting your illness does not mean giving up.

  • Appreciate the good in every day. Focus on what you can do! Do not focus on what you can’t do! Savor and appreciate everything.

  • Stay flexible in all ways. A rigid pole often tends to break in the wind. A flexible pole will bend and give in the wind. Being more flexible will add a new dimension to your life.

  • A person with a good attitude is much easier to be around and is good for our well-being.

  • Being positive is a choice! When we label everything “good” or “bad”, we lose sight that we cannot savor one without the other. You cannot have the sweet without the bitter. This is life!

  • Explore the stressors in your daily life. Find an outlet to help you release your stress.

  • Procrastination, denial, fear, and apathy only delay the opportunity to begin our own self care. Don’t hesitate to ask for help when you need it.

  • If you don’t laugh every day, start! Laughter has all kinds of health benefits. Don’t take yourself too seriously. Don’t stop laughing!

  • Plan ahead for what you can and be aware and engaged. Always have a plan B, C, or more.

  • The best exercise or activity is the one that you like and you are willing to do. If Parkinson’s prohibits us from doing something we love, then we must find a replacement for that activity.

I hope these are helpful to you.

Karl

An Exciting Documentary Project Called The Animated Mind of Oliver Sacks

UPDATE 07/23/18 – I am happy to report that The Animated Mind of Oliver Sacks project on Kickstarter met and exceeded it’s goal by nearly 25%!
I am so glad to see the support and deep interest in Dr. Sacks’ work continues on! I can’t wait to see the release of the film!
-Karl
————————

In the medical world, it is a rarity to uncover a medical anthropologist and an ambassador of compassion who writes with humor, tenderness, truth, sensitivity, and frankness. Dr. Oliver Sacks was all that and more. To this day, I don’t know of a greater contributor to the world of Parkinson’s disease. He was a tenacious advocate and Levodopa researcher, as documented in his book Awakenings and then movie starring Robin Williams. Over 50 years later, Levodopa remains the gold standard drug for Parkinson’s patients.

On a personal note, I started taking Levodopa in 1991, had I not had access to this medicine, I can only guess what my life would look like.  This life-changing drug has given me the ability to move, to speak, and to function. Like millions of Parkinson’s patients around the world, I am and will be forever in Dr. Sack’s debt for the gift that he has given me and the Parkinson’s community.

The Animated Mind of Oliver Sacks

The Animated Mind of Oliver Sacks

Oliver Sacks left us in 2015 but his numerous books, writings, lectures, and interviews live on and on. Now, thanks to the passion and vision of documentary film-maker Dempsey Rice, comes The Animated Mind of Oliver Sacks. There is just over two weeks left to complete this important Kickstarter campaign and bring over ten years of exclusive interviews to the big screen. Through the beautiful medium of animation, Dempsey and her team will show us Oliver’s refreshing and revealing outlook on medicine and compassion, music, gratitude, and the down to earth attitude that made Dr. Sacks so revolutionary.

Dr. Sacks connected with his patients. He deeply cared about people and their care. Oliver Sacks understood the uniqueness of every patient and took a fresh approach to the doctor patient relationship. Both a compassionate neurologist and a tenacious investigator, Sacks believed that the patient should be more empowered and in greater control of their care—an uncommon and somewhat controversial opinion for many physicians. You can hear his compassion in this quote:

“My note was a strange mixture of facts and observations, carefully noted and itemized, with irrepressible meditations on what such problems might ‘mean’, in regard to who and what and where this poor man was – whether, indeed, one could speak of an ‘existence’, given so absolute a privation of memory or continuity.”

― Oliver Sacks, The Man Who Mistook His Wife for a Hat and Other Clinical Tales

Dempsey says, “Animation is a great art form.” The medium of animation adds a whole new dimension that will elaborate on Sacks’ insights. Meshing Sack’s spoken words and powerful visuals of the stunning animation enhances the thoughts and concepts that are discussed onscreen. Through the power of film, we will see Dr. Oliver Sacks in what I believe to be a memorable moving documentary that encapsulates the immense impact that he had and continues to have on medicine, our medical care and our perception of medicine in general.

I think that this quote summarizes Dempsey’s passion, drive, and appreciation for Sacks’ works: “Throughout our time together, I was consistently awed by Oliver and his deep compassion for all living things.  His unfailing curiosity drove him to explore the magic of how our brains work and delve into the extreme joys and sorrows that come with human existence,” said Rice.  “My hope is that this film inspires new insight and deep compassion for the human experience, in addition to celebrating Oliver’s irrepressible enthusiasm for, and curiosity about, the human mind.”

Upon completion, Dempsey hopes the theatrical release will be available in early 2020.

I encourage you to learn more about Oliver Sacks and Dempsey Rice’s film, The Animated Mind of Oliver Sacks at the following links:
Kickstarter campaign page: http://bit.ly/animatedmind4,
Website: http://theanimatedmindofoliversacks.com/
Facebook: https://www.facebook.com/TheAnimatedMindofOliverSacks/
Twitter: https://twitter.com/oliversacksfilm
or Instagram: https://www.instagram.com/oliversacksfilm/

EverydayHealth.com Recognizes ASoftVoice.com Blog as One of the 10 Parkinson’s Disease Blogs to Help You Stay Fit and Positive!

EVERYDAY HEALTH logo www.everydayhealth.comRecently, EverydayHealth.com recognized ASoftVoice.com, as one of the 10 Parkinson’s Disease Blogs to Help You Stay Fit and Positive.

It is such an honor to be included with so many outstanding websites! Many of the chosen blogs on the list are included on our blog resource list. If you know of a blog related to Parkinson’s that we overlooked, please let us know and we will check it out! Thanks to EverydayHealth.com and to you, our readers! Congratulations to the other bloggers on EverydayHealth’s list and to every blog sharing their important story!

Accept Your Mission! It’s Not Impossible! Focus Your Energy, Wisely!

If you are embarrassed, sad, shamed, or lack self confidence about having Parkinson’s, I am here to tell you that you don’t have the energy or time to devote to such unproductive emotions. Stay strong! You have joined a community of amazing, caring, helpful people who are there to support you and encourage you. Spending time on activities that take you away from being your best will only deplete you more. Choosing to be positive and to be your very best can be a reality and not a mushy platitude!

It is up to you to make the first move. Admitting and succumbing to the realization that you need help is not weakness but new found strength. Helping oneself to learn about how others are surviving and thriving benefits all involved. This generous group of people with Parkinson’s and care partners are ready and willing to share their experiences of what has worked and what needs improving. There are tomes of great advice, educational videos, supportive medical experts, and organizations with helpful support groups and exercise programs! Be aware that your improvement and care all begins with your passion, diligence, and commitment to getting better.

I won’t say that being thrust into the world of Parkinson’s is easy and nor is it your first thought to just accept it and move forward. I had some dark days until I realized that my body, mind, and spirit were in jeopardy. My being is my responsibility. There is plenty of help out there, but you are your greatest resource. Now, build your team!

Parkinson’s is an illness that you do not fight, but work with, work around, and find solutions that work for you. In other words, Parkinson’s takes work! I, like you, am on a constant and continuous hunt for wellness or at the very least, some therapy, drug, exercise, or device to improve my condition. I wish you well!

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