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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.

Our Health Is On The Line!

Future Health?

Future Health?

In just over a month, the United States of America chooses a new leader. One wants to repeal the Affordable Care Act (ACA) and the other supports providing insurance to those who had none. One said they heard terrible things about the National Institutes of Health (NIH) and the other will support funding research. One denies climate change and the other has concern about the global impact that it does, and will have on our planet.

As someone with Parkinson’s disease, I want a leader who will move science ahead, take a hard look at research for all illnesses, and  expedite funding for promising studies. This really hasn’t been a topic that has been thoroughly discussed by either candidate.

Our health is on the line and the decision of our next President will play a huge role in our  future health, on so many levels.

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

Making Choices

Some bridges are best left alone.

Some bridges are best left alone.

Maybe just maybe it’s time to turn off the news, or at least mute it. Let’s stop worrying about the parts of our lives that we can’t possibly change. There is that rare morsel of inspiration, a nugget of knowledge or a touching personal story that we connect with, but those moments are getting fewer and fewer. Not to sound cranky but I’ve had it with the news-time barrage of drug commercials and the fascinating narrative of side effects to watch for.

Add on the tragedies, issues, crimes, and injustices around the globe that may or may not have direct impact on us personally. The inundation of messages can become overwhelming. Should I really care that a coffee chain is using a blank red cup without a holiday message? We create controversy where there is none and where it isn’t needed. Let’s keep our eyes on the magicians and not the dazzle of the people who misdirect us elsewhere.

The carnival barker with the loudest voice and the most shocking tidbits to say aren’t always the brightest, kindest most meaningful, or pertinent. Speaking to hear your own voice, unless you are doing speech therapy, is strictly noise.

If you are dealing with Parkinson’s disease or any illness, you know as I do that our personal energy is precious, unpredictable, and can come and go without notice. I’m of the belief that it is crucial to weed out unnecessary distractions that drain us, derail us, or add to our worry. Next time you hear a controversy, ask yourself is this really another concern to add to the pile, or one that I can ignore?

Bond Is Back and Parkinson’s Is Still Here

Held in Bondage

Held in Bondage

Today, the newest James Bond blockbuster, SPECTRE, is released in the United States! The Bond films are now over 50 years old, just like the gold standard Parkinson’s drug, L-Dopa. The movie cost over $300 million and made $80 million in a record breaking weekend in the United Kingdom.

I am and have always been a huge Bond fan so don’t get me wrong. I am wondering why and how we can devote so much capital, time, and labor into the entertainment and sports industries and see so much innovation within those industries but see such little innovation within medical breakthroughs?

Dogs Give Us So Much!

Pure Sweetness!

Pure Sweetness!

 

Animals have healing properties all of their own. Look deep into these amazing and loving eyes and you can sense the intense power. She makes me laugh and smile and can frustrate me to no end. That’s my dog!

 

 

 

 

Nutrition, health, and news to come from World Parkinson Congress (WPC) and the Brian Grant Foundation (BGF)

Nutrition in general is a vital component to our daily health and to someone with Parkinson’s, diet is even more crucial. Staying hydrated and eating the right fruits and vegetables will keep your digestion active to help avoid constipation. The better your gut is working, the more likely you are going to get top efficacy from your medications.

Summer color and flavor
Summer color and flavor

Eating local from Virginia farmer’s markets in spring and summer is a treat and is my healthiest alternative since I don’t grow my own food. When buying fruits and veggies that are shipped far distances it is easy to forget that produce that travels miles loses some of the nutritional potency as opposed to that of a local provider. Winter and fall is a bit more of challenge for me to eat local.

I noticed a tremor in my left foot at age 17 that only showed up sporadically. At age 23, and after about 9 or so different doctors, I finally got my diagnosis for Parkinson’s disease. It has been over 30 years since my first noticeable symptom and not far from 30 years from my diagnosis date. I truly believe that eating low on the food chain and eating vegetarian has helped me remain on a low dose of medicine.

If it is true that we are what we eat, and I do, then we need a greater awareness and more consideration for the fuel we load into our bodies. Food and food science has changed our diets dramatically with additives, emulsifiers, and sweeteners. I am careful to eat organic whenever possible. I eat healthy but there are times when my craving for a cookie or chip takes over and I have to submit to the urge. Overall, I stay aware of what I am eating and how it may interact with my medication. I am very protein sensitive and my medication can fluctuate tremendously when it comes to dairy, nuts, eggs, and soy.

Trying to find a product without high fructose corn sweetener, wheat, or citric acid, in a large conventional grocery store is more of a challenge these days. Understanding your food now requires knowing a little more chemistry than when I was a boy. Good nutrition is achievable but like most important health decisions a healthy diet takes preparation, planning, and forethought.

Eating healthy isn’t always the cheapest of ways to eat, so compromise and alternatives have to suffice at times. It is so important to read those labels and know what is in your food to make the best choice.

On a personal level, I have little doubt that my being a long-term vegetarian has been of benefit in my digestion and pill absorption as well. Eating lower on the food chain and eliminating meat products helped me maintain my weight, improve my energy level, clear my skin, and feel clearer of mind to boot.

As the 2016 World Parkinson Congress (WPC) nears its arrival to Portland, Oregon, also the home of the Brian Grant Foundation, I am excited to hint about a program that will soon be released. The Power Through Project (PTP) is something new and an event for everyone to take part in. Stay tuned for upcoming announcements. See you in Portland!

Michael J. Fox’s Show Could Change Parkinson’s Disease Perception!

HBO’s In Treatment was the first series I have seen Parkinson’s Disease (PD) addressed in prime time television. Michael J. Fox takes PD somewhere it has never been, prime time on a non-cable network. To bring Parkinson’s to the forefront of the mainstream is both exciting and potentially dangerous. Fox has been an outstanding spokesman and keeper of the flame in the public eye. His voice and face have paved the way for many of us with young-onset, dispelling the myth that PD is just for the elderly.

Fox’s uncontrolled movements (known as dyskinesia which is a side effect from medication, not Parkinson’s) are often accentuated and initiated by stress (possibly added by being on camera)..I know because it happens to me!

The Michael J. Fox Show has a challenging responsibility to entertain about a not so entertaining illness. I personally would like to see the show strive to accomplish the following achievements:

  1. As a person living with Parkinson’s Disease since the age of 17 (over 30 years), I can admit that there are humorous moments to this not so laughable illness, but I hope not to see Parkinson’s used as a punch line.
  2. I hope the show doesn’t downplay the seriousness of this neurological disorder.
  3. PD gestures are not slapstick, not humorous, and not publicly understood, but might be understood with the show’s help.
  4. I see this show as a tool to educate, inform, and inspire the public to learn about the symptoms of PD, medicines and side effects, and make a call to the public that PD awareness and support is crucial to making strides in better treatments and an ultimate cure.
  5. TMJFS is a wonderful place to address the issue of caregiver burnout, family distress and learning to talk about illness, the role stress plays, and denial.

These are but a few of the topics I hope Fox considers to address in future episodes of his show. As important as it is to laugh, so is the need to responsibly educate and inform.

What Does A “Cure” Mean?

What does a cure mean to you? Does it mean stopping the illness dead where it is or does it mean a complete elimination of the illness totally and completely?

These questions are not easily answered and are a puzzle for patients, researchers, doctors, and most of the rest of those involved in the Parkinson’s disease community. I have pondered the question for some time now and think I may have a realistic idea of what may be a fair idea of a cure.

My perception of a cure, at this stage of my life, is a treatment or medication that halts disease progression and at least minimizes symptoms of illness with no side effects or bodily harm. To this date, the closest thing to my definition is the power of Reiki, Yoga, Meditation, Vegetarian Diet,Medication Management and Reducing Stress. It has taken me years to find what works for me. I believe that we  must find what works best for ourselves (avoiding anything harmful) through self discovery and the help of our doctors. What will work for some may not work for others. We are all unique and different. Keep an open mind. I’d like to think that we can all find the “cure” that we seek.

That’s my take on it.

I just watched Michael J. Fox’s interview with Diane Sawyer. While I can’t say that I agree 100 percent with everything he says in the interview, I will say, I agree with his optimism and strongly suggest that finding the positives in your life and not focusing on the negatives will make life more enjoyable.  Here is the interview: http://abcnews.go.com/blogs/health/2012/05/18/michael-j-fox-looks-past-stem-cells-in-search-for-parkinsons-cure/

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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