Blog Archives

Sequestered Gratitude

If you are complaining about being sequestered at home, be grateful that you have a home and a place to reside through this craziness.

If you are arguing with your family member about who ate the last waffle, be grateful that you have the time to be with them.

If you aren’t terrified from this virus, then you aren’t alive.

If you are bored, then you have nothing to read, have nowhere to walk, made no attempt to expand your artistic acumen, are unable to access television, internet, radio, phone, or paper and pen.

If you have nothing to do while you are sequestered, then you know everything, have the perfect home, can do everything, and have achieved perfection. Congratulations!

If you are unable to just enjoy a few minutes of quiet time, by yourself, maybe you should ask yourself why this is?

If you aren’t grateful for this time with your family, dog, cat, or loved ones, it’s time, right now.

Take advantage of this precious time and savor your life at home!

A Very Different Parkinson’s Awareness Month!

In just a matter of days, our world has been turned upside down and around by an invisible and deadly invader. Many of us have turned to an online life of Zoom or Facebook Live. Whether it is for schooling, our occupation, support, workouts, weddings, births, or even funerals. Our life, from start to finish, has become a digital experience.

If we were a lonely planet before the COVID-19 virus’s rampage, our sequestering for our health doesn’t help our mental state. Socializing and getting to know our neighbors is improving and uniting us in ways not seen since WWII.

April is Parkinson’s Awareness Month! As COVID-19 continues to impact the world, it frightens me that all of us who have Parkinson’s disease are more at risk to the virus. Many of us have weakened immune systems and are susceptible to respiratory complications.

 

This Parkinson’s Disease Awareness Month Has Changed

This is a Parkinson’s Disease Awareness Month like no other! As our message of awareness may get muffled in the shadow of the threat of this virus, it’s important to continue to share information. Normally, awareness about Parkinson’s would be focused on informing those unfamiliar with Parkinson’s about:

  • History of Parkinson’s

  • Diagnosis

  • Prognosis

  • Parkinson’s Medications

  • Research or Therapies

Rather than offer an awareness about Parkinson’s, we should consider a more timely tact to provide an awareness about protecting ourselves from this dangerous Coronavirus! Please stay strong and maintain your physical and mental health by staying active. So, here are a few sites to keep you informed and up to date:

Please don’t take unnecessary risks. Be safe! Be careful! Be Well!

Spread Love, Compassion, Care, and Kindness-Not the Virus!

Change to the highest degree is here with rampant speed. It’s a new normal for us all. Social interaction and daily life as we know it will most likely change, forever. Change can be uncomfortable and difficult to accept. Only time will tell what our new normal is going to look like.

Knowledge is Power - A Soft Voice.com

Be Careful-Be Smart

As COVID-19 makes its way around the world, it is up to us to remain vigilant as we look after ourselves, our loved ones, our neighbors, and everyone on the planet. It is terribly ironic that a pandemic can confine us to our homes, but highlights just how connected we are to one another. Rich or poor, whatever your race, gender or nationality, we are all in this together.

It is my hope that we choose to share compassion and kindness, in this time of need. This is our opportunity to reunify our nations and the entire planet. Whether you choose to deny climate change or think the Earth is flat, there is no denying this virus and the havoc that it is causing.

Take Precautions

Those of us with Parkinson’s disease may face an even higher risk than the rest of the population, so be extra cautious in your cleanliness, daily care, and exposure. Educate yourself with these important sites, in case you need more information about protection and care:
Virginia Department of Health – COVID-19
Centers for Disease Control (CDC) – Coronavirus (COVID-19)
World Health Organization (WHO) – Coronavirus disease

HOME-BOUND IDEAS

15 Ways to Improve the Lock-down

  1. Music feeds my soul and if I miss a day of my music, the day just isn’t complete! Enjoy some type of music that connects with you! Whether the music moves your spirit, your energy, or your mood, play something that moves you.

  2. Reality TV is as close as your nearest window. Too often, we overlook the inspiration of nature that surround us. It may be a brilliant sunrise, a running squirrel, or your neighbors’ dog. Appreciate the simple beauty of the day around you.

  3. Discover a new talent on YouTube. Whether you want to learn to sharpen your knives or learn to juggle or dance, you’ll find it there.

  4. Hone and expand your creativity by drawing, doodling, painting, writing, cooking, or learn a new language or musical instrument.

  5. Forgive me. They are called books. They are low-tech but they still have a place.

  6. Stay active and force yourself to keep active.

  7. For stress reduction, try to meditate and check out the App called, Headspace. This is the one that I use and enjoy!

  8. Use your technology to keep connected with family and friends.

  9. Build a new daily routine.

  10. Take special care of your animals. Don’t forget them!

  11. Look after your neighbors.

  12. Be kind, compassionate, and patient.

  13. Don’t forget how to laugh.

  14. I plan to organize my old photos and find a way to use them.

  15. Streaming services like Netflix have great content for the whole family.

These are just a few suggestions to inspire moving ahead in this trying time. Be safe and take of yourself and anyone else that you can!

I hope these suggestions are helpful. My intent is to offer some positive thought.

Trying to Process Shock, Loss, and Grief

I didn’t see it coming and the shock that I feel is one full of confusion and sadness. Saturday night, our 11-year-old Chocolate Labrador, Lily, jumped off the couch for her late walk, but her eyes were unclear, her head was unsteady, and her breathing seemed shallow. We think she may have experienced a seizure. When your chronically hungry lab turns down an offering of a treat or a hunk of cheese, your warning sign has been activated. Lily was a canine vacuum, so when she turned down anything close to being edible, there is an emergency pending.

Thinking that you are flexible and easy-going can be dramatically different until, you are challenged.  Life has a way of sneaking in unexpected setbacks that knock your feet out from under you.  We recently experienced the challenge after picking up the flu, following almost a month-long trek through the southeast. This strain of the flu knocked us on our butts, hard. It lasted far longer than we had expected. Our loyal lab, Lily, helped us mend and kept us company, the whole time. She was our nurse and companion through the coughing fits. She wanted to make everything okay. She was selfless!

Angela and I were in crisis mode. We rushed Lily to the 24-hour emergency veterinary clinic. It was early on Sunday morning. Tired and scared is a bad combination, especially when you are worried about the fate of someone you love.

Lily was an exceptional dog, with great intelligence, and a stubbornness for chewing sticks and sometimes eating them. We just assumed that a stick had lodged somewhere, causing her discomfort or a blockage of some kind. Other than this new development, Lily had shown excellent health and vigor for a dog of her age. She looked spry and active and never missed a meal or a treat.

Motivation

 

Lily was a sensitive and caring dog. At first encounter when you met Lily you would see her lip raise and her teeth would come out—some saw a snarl, but if you knew her and her nature, you saw her smile. She greeted everyone with her welcoming smile. Her smile brought so much joy to so many, especially us.

It was close to midnight on Sunday morning at the emergency vet, when Lily tried to smile at her doctor but was only able to make a partial lip raise. She really tried. Her tail wagged and she searched for a greeting, but the energy just wasn’t there.

Our emergency vet was a young man in his early thirties. He was a very gentle and accommodating doctor who bonded immediately with the ailing Lily and her anxious parents. We explained our situation to the doctor. He told us he would scan Lily to check her insides for any possible cause for her discomfort.

Ten minutes after he had left the room, he returned with devastating news that she was bleeding in her heart due to a cancerous tumor. Her options were not fair to her and we were left with no choice but to give her a peaceful sendoff. We would not be taking her home again. It happened so fast and at around 1:00 AM in the morning.

 Trying to comprehend the situation and the sheer rapid pace of information and decisions that were being flung our way took all our concentration and strength. Our energy was drained, and our emotions were overwhelmed. We were not prepared for what the universe was doing to Lily and us and the speed with which it was happening. Lily was gone by 4:15 AM. All that I can say is it was a peaceful death. She didn’t suffer.

Dealing with the death of those who are close to us doesn’t get any easier with age. We are still in shock. The pain may dissipate over time, but it will never go away entirely. There are at least half a dozen places in the world that I don’t want to go– one of the top places is the emergency vet in the very early morning /late night hours, or at all.

We are so grateful for the emergency vets’ efficiency, compassion, patience, and kindness. He made a very tough situation much easier when it could have been even more difficult. As hard as losing Lily has been, we see a positive in the wonderful care that she received and the tenderness that we all were shown. There was no way to prepare for this shocking experience but together we will support each other to get through this difficult time.

We miss her so much!

Getting What You Need-Support

 

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.

 

Ideas For The New Year

 

Fresh Starts Aren’t Always Necessary

It’s a new year and the thought of those resolutions on the club napkin are but distant memories. Seriously, resolutions can be wonderful intentions yet only to create a burden that wasn’t the intention in the first place. If you are truly goal-oriented, resolutions are simply extensions of those goals that are nagging you the most.

Making Priorities

My biggest battle with my body and mind as I age with Parkinson’s disease is prioritizing:

  • Contending with what I should do and what I don’t want to do.
  • Weeding out projects that I really want to do but know I shouldn’t do.
  • Identifying what I can let go of.
  • There are things I must let go of just to get better.

 There are sacrifices for one reason or another that we all must make. Illness doesn’t always influence our important decisions, but it can most assuredly be a contributor to the making of those decisions.

Drive

Illness provides a perspective for many of us, due to a pushing drive and a boosted sense of urgency. The only solution to quelling the nagging feeling, is fulfilling that drive to produce.

Trimming and Expanding

Most resolutions includes weight loss, health, reading more, less television, or a making more of or a reducing of something. Wanting to improve ourselves is the right direction to go, but if we go overboard, it may have a reverse effect and cause us stress, anxiety, and or tension. We must be careful to ensure that we aren’t doing ourselves a disservice by taking on too much. Knowing our stress level and not exceeding it is crucial to our well-being. Keep your stress level in mind as you monitor your health regimen and overall wellness. Be kind and forgiving to yourself whether you fall off the diet, or not. Stay committed to your projects of 2020! Best of luck!

Does the Parkinson’s Profile Exist?

I have been fortunate to meet hundreds of people over these thirty plus years with Parkinson’s disease (PD) at numerous events. After a while, you notice more and more about yourself and those around you. It’s a question that I have been asking for years: Is there a firm personality profile, specifically for people who get or are more likely to get Parkinson’s disease (PD)?

Many of the neurologists that I have shared the idea with, have told me that there wasn’t a profile, while an occasional doctor thought that I might be on to something. I have always had a curious mind and having met so many people from around the world with PD, it has given me an opportunity to make some non-scientific observations and even a rough hypothesis. Here are a few of my thoughts: People with PD are mostly well-educated, professionals, type A, over-achievers, in high stress work, curious, creative, and are outgoing people. People with Parkinson’s are often risk takers and not risk averse. They appear to be determined and are driven to a result. From personal experience, people with Parkinson’s are rich in questions, have an insatiable curiosity, and are quite clever.

What if there is a Parkinson’s profile? What does it mean? Could it help lead us to helping people even before they begin showing symptoms? Parkinson’s disease affects people in so many unique ways that it has been discussed that it could be more than one disease. If PD is more than one disease, it could take several varying solutions to get this illness under control?

The complexity of the human brain and body is unimaginably daunting. It’s inner workings, connectivity with multiple systems, and the diversity of chemical reactions and maintenance is hard to fathom.

In the past thirty years, while I have seen numerous studies, trials, pharmaceuticals, surgeries, procedures, and therapies, however, I have yet to see a targeted individual plan that works for everyone with Parkinson’s. Maybe, if there were an understanding of what our universal link or links to this disease were, we could break it down and eliminate what it is that unites us all, illness-wise.

The brain and all its’ complexities have proven to be a formidable opponent in giving up answers. Parkinson’s disease is a mysterious and complex condition that is going to take multiple approaches to unraveling its’ secrets.

The Mysterious Future

 

Ben Franklin is quoted to having said:

Do not anticipate trouble or worry about what may never happen. Keep in the sunlight”.

This quote speaks to me when discussing Parkinson’s disease or any illness. Living our best life now, prepares us for a better life in the future. For many of us who try to live in the moment but sometimes slip into predicting the future, we create unnecessary worry, fear, and anxiety. Procrastination for taking care of ourselves now, only delays our future wellness.

There are actions that we can take to prepare for our future physical health, financial health, mental health, and spiritual health. Some future planning can be very helpful in reducing future anxiety.

Our creative and active imaginations can run away with innumerable variations of what our future self will look like. Put a hold on that thinking and focus on the now. Our futures are variable, undetermined, and largely up to the decisions that we make, right now. Fate, destiny, karma, and the universe are most likely going to intervene as well, so let the winds blow and hope for the best, but don’t fret over the outcome, especially if it hasn’t happened, yet.

The quote also refers to the ‘sunlight’, something we all need but many of us with Parkinson’s are susceptible to skin problems. Due to the way our medications may impact our skin to sunlight, it is so important to  apply  sun protection to our skin, avoid direct sun exposure, monitor your skin, moles, and marks for any changes that might be a red flag to rush to your Dermatologist.

Franklin was focusing on staying positive and keeping a positive attitude for the future, in his quote. This is a message for us all to remember when we look to the future. The unknown isn’t to be feared but should be a fresh opportunity. The future may be different than we expect it to be, but it doesn’t have to be negative just because it is out of our control.

An Interview with journalist John Williams on his Parkinson’s journey and the common term that he created.

The following are 5 questions for writer/journalist, John Williams, who I met recently, at a local Parkinson’s disease (PD) event, here in Fairfax, VA. We talked about how important it is to remain active and not to spend too much time on the couch! Learn about John’s well-known creation and his amazing career as a journalist.

Question 1: You have been a journalist for many years and are one of the foremost experts on disability. You are known for coining the term “assistive technology”. How and when did you come up with this iconic term?

In 1982 I was writing a story for the Washington Post on a blind business man using a talking terminal. I was trying to find a word to describe what the technology to help the blind man that would be immediately understood by the reader. I grabbed a pencil and tablet and started writing phrases. I don’t remember the phrases that I wrote down. After 90 minutes, the words assist technology were the last words I wrote. However, I did not like the term assist technology.  I wrote assistance technology and service technology. I did not like it. Then I came up with the phrase assistive technology. I liked the way assistive technology sounded. I used the term assistance technology in the article. The editor accepted it. So I used it again and again and again in articles.

The word assistive was not in any English language dictionary at that time. It is now.

Question 2: When did you realize how important your creation of the term “assistive technology” was, and that it was catching on?

In 1985, I started being invited to conferences dealing with technology for disabled people. The words “assistive technology” kept appearing in the conference titles. And I was introduced at conferences as the creator of the phrase “assistive technology.”  I did a lot of free-lancing in the 1980’s.  I wrote for newspapers, magazines, newsletters and assisted TV producers from Japan, Brazil, Canada, New York and Washington, DC and did documentaries on disability issues.

My regret is I have been told many times by lawyers that if I had copyrighted or trade marked “assistive technology” I would be a rich man.

Questions 3: Your long and impressive history in journalism has introduced you to a laundry list of American presidents, celebrities, politicians, and prominent people in the media. Can you share some insights about any of the behind -the-scene interviews that relate to your Parkinson’s disease? I know you talk about how you have fought stuttering for most of your life. Were those who you interviewed, patient and understanding when you interviewed them?

I never had a negative experience with any of the well-known people I have interviewed. I stuttered less when interviewing politicians, CEOs, scientists, writers, actors and other well-known people.

I had two negative instances regarding my stuttering in which I won awards for stories. In 1972, I was working for a company in Pennsylvania that was moving into the environmental area. The company had an office in Rockville, MD.  The article dealt with waste disposal in the North Sea. The article was published in January 1973. My boss received a letter from the corporate headquarters in Philadelphia, PA. The letter stated that I had won a journalism award for my article on waste disposal in the North Sea. The letter listed the names of the other winners. The letter said that I was not to go to the awards ceremony, and I should not be told I won the award. I should be on travel on the award night.

I learned from a colleague about the award. When I confronted my boss about the award and not being sent to accept it, he said, “Corporate knows there will be thousands of people at the ceremony and a lot of international press. The award winners will have to speak. Corporate office wants to avoid the embarrassment of you stuttering in accepting the award and the embarrassment of people knowing that we hired people who stutter.”

I was told that if I went to the ceremony on my own, I should not come to work the next day.

Six weeks later I walked into my bosses’ office and quit.

A similar situation occurred when I wrote for an international magazine. I won an award from the California Governor’s Committee for employment of disabled persons. My boss told me I won the award, and the company would send me to California to accept the award. The night before I was to leave to collect my award, my boss told me that my trip was cancelled. Why? Because the bosses  were afraid I would  stutter on camera or while being interviewed. The company would be embarrassed.

I could not believe what I had just heard. I had been with the company for 3 years, and I had interviewed Senators, congressman, Microsoft’s CEO Steve Balmer, and other well-known people.

I did not go to the ceremony. My award was mailed to me.

Before I interview a well-known person, I make sure I know the subject area well. Sitting before a mirror I make believe I am interviewing the celebrity. I memorize my questions, and I keep my questions short. I listen. When I can I use a portable, digital voice recorder and take notes. I keep eye-to-eye contact with the person I am interviewing.

In addition I have a Sony handheld recorder. I use the Sony to tape my questions and compare my current interview past interviews. I listen to my recordings to hear my stuttering.

Question 4: Technology and assistive technology (AT) has greatly improved and is more accessible to the masses than ever before. You have been active in making this a reality. What have you seen over time and what do feel is left to do for those needing help with their conditions?

A lot has to happen.  Manufacturers of AT products must improve their marketing programs. They need to advertise their products on TV, on the Internet and in publications. Local, state and federal governments must put more money and resources into assuring that schools have the AT products from pre-school through college

The Assistive Technology Industry Association has to broaden its outreach in schools and businesses.

The press must be educated on AT products.

More people with disabilities must get involved in their communities as leaders, politicians.

More corporate giants must work with AT manufacturers to develop better and less expensive products.  Microsoft, IBM, Verizon, AT&T, Apple and Amazon are doing this.

There should be a month titled Assistive Technology month and PSA run showing the contributions of people with disabilities to the world.

A history course should be developed for schools on the contributions of people with disabilities throughout history.

Question 5: You have written for Business Week and several well known publications. What was your experience like as you worked with colleagues and you slowly saw your Parkinson’s disease (PD) advance? Were they understanding, cruel, at ease, or none of these? Did the publications that you wrote for make it easy for you or did you face challenges from your employers? Sadly, there are still challenges with employers and those dealing with conditions. Do you have any advice for them?

When I worked for Business Week, I did not have Parkinson’s disease. I was diagnosed with Parkinson’s disease 8 years ago. Since I was told I have PD, six publications that I wrote for regularly have dropped me as a contributing writer. Editors stopped calling me to write stories as a free-lance writer. Editors stopped sending me to assistive technology conferences.

In 2016, I co-wrote a documentary script with Carol Bash, an independent producer-director for Home Box Office and PBS.  The script was a history of the Civil Rights movement in the U.S. At the time we wrote the script, my PD was out of control. I was having a tough time daily. Over six months I had three separate meetings with possible investors in the project. Because I could not guarantee the investors that I would be on the project from start to finish, they declined to put up the $200,000 to start the project.

I have also missed about a dozen deadlines in five years because of my PD. In several situations the editors were justified for not calling me again. Twice I sent in articles that had numerous spelling errors and poorly written.

My advice to employers interviewing a person with PD is learn about PD and what the person can do now. Give the person a chance to show their ability. Ask the person, “Can you do this task?” If the person says yes then ask “In the time allotted OK? or do you need more time?”

While Parkinson’s disease has slowed me down, I can still work and want to work, I can still do things on my own and will continue. I will keep my muscles moving. I am determined either to defeat Parkinson’s disease or fight it to a draw.

For more informtion about John and his work, visit his website by clicking this link.

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.

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