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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.

Interview: Brian Huskey, Comedian and One of the Stars from the new TBS Show, People Of Earth!

Brian Huskey

The very funny Brian Huskey!

Today I am overjoyed to ask some questions of one of the funniest and most entertaining people on television. Brian Huskey may not be a name that you recognize immediately, but you’ve seen him in numerous movies, television programs, and commercials. Brian has been a staple on Comedy Central and Funny Or Die. He’s been making us laugh for years. Now, Brian has a new series coming out that I am looking forward to seeing. I have seen ads for the show and they are funny.

Beginning this Halloween on TBS, Brian stars with a collection of former Daily Show comedians and other cast members that you’ll recognize on People of Earth, a comedy about a support group for people who encountered alien abduction.

Brian, thank you for speaking with me. We both come from North Carolina. North Carolina has been in the press a great deal, lately. North Carolina has had an impact on many great comics and entertainers, like Andy Griffith, Lewis Black, Zach Galifianakis, Ken Jeong, and you, just to name a few.

 

Did growing up in North Carolina mold your comedy?
Absolutely. I think wherever you grow up has an influence on your art, sorry had to get real and deep right out of the gate. But I would say that for some it could be something to react against, but I love NC, and something about that place and the people made me feel able to look at things from the outside, as many folks do with comedy- deconstruct things, question things, satirize etc. But at the same time I had a real feeling of home and safety, and love for all the beautiful quirks of the south.
How did you get to where you are to be on a major new series? Did you do the stand-up circuit or do you prefer improvisation?
I have only tried stand up once or twice, and very half assedly when I did try it. It’s all been improv for me. That was my acting school, and my comedy education. Truly, finding the Upright Citizens Brigade Theater was the most important shift in my life. It is what help set me off on what had been a life long dream, but one that I deferred until I was 28.

And to answer how I got where I am to get on a series, I worked really hard for many, many years and had many disappointments. But over time, my reputation led to more work, and then people became more familiar with me, which I think makes the decision making process easier bc you are a known quantity. Dare I say I became more Starbucks and less Local Coffee Place You Don’t Know So Why Risk It? I know in that analogy I am sort of the evil corporate entity, but remember I am not the consumer in the analogy, the networks are. Networks aren’t known for shopping local so much.
Do you prefer stand up or improve? Where does your comedy come from?
Improv. I prefer to work with other people. I do love doing solo bits, but I don’t think I am disciplined enough to do stand up- working the same joke over and over until it’s perfect, building a set from those jokes. That works perfectly for some people. I’m sure it’s a personality type thing, but I like the discovery of improv- it’s a different kind of comedy high. It’s like a jazz sampler you would find near the checkout of the Starbucks analogy mentioned before.
I saw you play a doctor on Marketing to Doctors: Last Week Tonight with John Oliver (HBO). I laughed so hard that it hurt. Was your performance scripted or improvised? (Brian is the actor playing the doctor at the end of the clip.)
Thank you! Happy to cause pain with my comedy. That was all scripted, But a lot of the script was just action line descriptions of my action, so I messed around there.
Will your new show, People of Earth be scripted or improvised?
It is scripted, but we would always do a take or two where we came up with new lines. I think that is essential in comedy, bc sometimes the writing continues once it’s up on it’s feet. What you thought was a killer scene or bit and then when you do it, it might need that extra tweak or even a different take on the joke. But it always has to be in service of the scene. I think some scripted shows are too rigid about the script, but I also think they trust the actor’s to “write”. One of our directors told me he knew I could write from my improv. That made me happy.

Have you worked with many of these actors and comedians, before?
Da’Vine Randolph, who plays Ivonne, were on ABC’s Selfie last year. Nancy Lenehan, who plays Margaret, used to be on a ABC series called Worst Week and I guested and got to do my scenes with her. I did a kid’s play reading improv show with Oscar Nuñez once.

Do comics hangout with other comics?
Yup. So much so that we refer to noncomics as “civilians”. We are a weird people.
How do you determine what is funny?
I have no idea. Behavior is funny, or it can be.
Were you the original “Sonic guy”?
No, I Pete Grosz and TJ Jagodowski were the original guys. Then they wanted a heterosexual married couple scenario bc some of their fine customers were asking why they had two gay guys selling their burgers? Because apparently in Arkansas where the company started, two guys can’t sit in a non truck car together and not have it look gay.
I would say that you are the “every man” comic. You look mild-mannered but when you speak and act out, the results are hilarious and surprising. Is that accurate? Do you like to shock and surprise?
Oh yes, I do like to shock and surprise. Less so as I have gotten older, but still I love being the package I am, which is very straight, and then having some dark or insane thing come from me is a nice combo. I have a TV special coming out Dec. 2nd on Adult Swim called Mr. Neighbor’s House, and it is just that- very off but in a straight package. It’s a kid’s show that plays in a damaged mind.

Many thanks to Brian and best of luck to him on his new show and upcoming TV special!

 

I hope everyone enjoyed this interview.

Hear my interview today, with DJ Andy at 1PM EDT May 11, 2016

Interview w/ DJ Andy

Interview w/ DJ Andy

I had the privilege to speak with Andy Butler AKA, DJ  Andy, about Parkinson’s disease. Listen in on our conversation and hear my eclectic selection of music–possibly a song or two you’ve never heard. Andy was very kind to allow me to program the music for our discussion. I hope that you enjoy it. Here is the link: http://www.radionomy.com/en/radio/radio-parkies

Exclusive Interview With Davis Phinney

Davis Phinney knows how to inspire an audience! I have had the privilege of seeing and hearing him speak on his dealing with early onset Parkinson’s disease several times. Davis is an Olympic Bronze Medal winner in cycling. He has achieved more wins – 328 victories in all – than any other US Cyclist.

The insight of Davis’ perspective is truly inspiring and a great way to begin Parkinson’s Disease Awareness Month. I hope that you enjoy this interview and will share it with others facing Parkinson’s.

I want to thank Davis and everyone at The Davis Phinney Foundation for allowing me this opportunity. What a great way to begin Parkinson’s Disease Awareness Month. I encourage you to learn more about Davis’ Foundation and the upcoming Victory Summit in Richmond, Virginia on May 19th, 2012.

1. How has PD changed the way you view life?

PD has had a significant effect on me – on my view of life and my place in it. I am much less likely to take things for granted than I used to be, and I’m much more ‘present’ for, and appreciative of, positive aspects to any given day.

2. What has PD taught you that you didn’t know before your symptoms?

It has taught me much about living with disability and disease that I wouldn’t have otherwise learned – and that has led to greater awareness, understanding and empathy – which I view as very positive and grounding.

3. What is your advice to newly diagnosed PD patients?

My advice would be to immediately check out the Every Victory Counts (EVC) manual! being newly diagnosed with this disease, one faces an uncertain frontier, and there may not be a full spectrum of resources or the right resources immediately at hand. We work hard to keep the information in the EVC manual relevant and highly applicable – and based on highly positive feedback from the Parkinson’s tribe – we’re filling a void.  So EVC is a good starting point as well as accessing the local Parkinson’s community for resources, support and connections available in the immediate community.

4. What do you do on a daily basis to fight your Parkinson’s disease?

I start each day with a smile in the mirror an affirmation stating my intention that this is going to be a good day.  I make it a priority to eat well (but not obsessively), take pictures, engage people in conversation and relish in the little victories; a good cup of coffee, a laugh out loud moment, an inspired sunset, etc.

In an active way I engage myself physically whether it’s through yoga, hiking, walking or cycling around town.  Getting outside and breathing and moving is a big key for me, but I feel some form of daily exercise, while good for anyone, is crucial for those of us living with Parkinson’s.

5. How do you think sports and teamwork helped prepare you for dealing with Parkinson’s?

Great question. The way I relate my athletic background in dealing with Parkinson’s is to give myself goals that are not unlike what I did when I was competing, but instead of focusing on winning bike races my focus is on enhancing my daily quality of life.  That’s the goal; to make today better – and in so doing, I setup tomorrow for success and the day after and so on. With PD, it helps tremendously to be self-sensitive, to have self-awareness, to ask the question: ‘how’s this medicine affecting me?’ for example. Athletes are usually instilled with this awareness, so that’s a plus.

As regards teamwork, we are not living with this disease singularly. There are (hopefully) caregivers around us (spouse, family, therapists, doctors), whom you are reliant on. By doing what you can to help yourself, you set a good example for the team and are in a better position to ‘marshal your forces’! Creating a good team is vital to managing this disease.

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