Author Archives: Karl Robb
Last Saturday, my wife, Angela and I had the great privilege to address over 300 people with Parkinson’s and their carepartners/caregivers in beautiful and historic Williamsburg, VA at the American Parkinson Disease Association (APDA) Virginia Education Day. This event was hosted by the APDA Hampton Roads Chapter and the APDA Richmond Metro Chapter.
Angela and I participated in a couples talk with Charlie and Cammy Bryan, who are well known for their state-wide work, writing and advocacy. We really enjoyed working with them! The moderator, Don Bradway, knows both couples and did a masterful job of getting us to talk about our lives, perspectives on Parkinson’s disease, and our philosophy on living well with Parkinson’s. We got to meet so many amazing people who are living well with Parkinson’s!
Neurologists from around Virginia did an informative panel on understanding, managing, and living with Parkinson’s disease. My friend and fellow advocate, Bob Pearson did a talk with a neurologist on the importance of clinical trials and his experiences in participating in these studies. A clinical dietitian, Ms. Ka Wong from Hunter Holmes McGuire Veteran’s Affairs Medical Center in Richmond did a very informative talk on inflammation and diet.
The final breakout, held concurrently with the caregiving session, was a panel introduction to the benefits of a variety of therapies including PWR!, Rock Steady Boxing, Yoga, LSVT/BIG and SPEAKOUT!, and Tai Chi! My wife attended the caregiver session which was a panel discussion with three family caregivers. This panel shared their experiences on a variety of caregiver issues, provided informational tips and offered resources.
What was unique about this conference was the variety of people sharing their knowledge with our Parkinson’s community – those living with Parkinson’s, the medical community, allied health professionals and more. This event happens every other year and brings Virginia’s Parkinson’s community together to review the developments in Parkinson’s disease, to inform, to inspire, and to educate.
Today, 9-11, marks an historic and tragic event that not only shook America but the entire World. The attacks of the World Trade Center, the Pentagon, and Shanksville, PA impacted the World, changing everyone’s lives. This day will forever commemorate the lives lost that tragic day and the heroism of the men and women who met the challenge of saving lives while risking their own. For a very brief period, I saw something that I had never truly witnessed, experienced, and appreciated.
On the frenzied morning of the fall of the Twin Towers, my wife and I were stranded in Atlanta where rental cars were nearly unattainable. Planes were grounded and we needed to get back to the DC area. The country seemed under attack and we were acutely alert, vigilant, and nearly paranoid–but, something beautiful rose out of the fear and chaos.
For about three weeks or so, a warm and loving blanket of compassion covered much of the World as citizens gave of themselves. In this time of immediate need, when so many were in shambles, volunteers ran to assist in various ways, just to be kind and of service. This is the best part of humanity–the caring, giving, sharing, and loving part that unites our citizen’s eternal hope and fortitude.
The acts of kindness like receiving a much needed rental car from someone that we barely knew, so that we could get closer to home, renewed our faith in doing good.The coming together and generosity reminded me that goodness still existed. An horrific event that took so many innocent lives brought us all together. I treasure the wonderful camaraderie of pride and love for humanity that shone for that gorgeous but ever so brief moment in time.
I have hobbies: I write, I read, I travel, I photograph, I do Reiki, and I collect shark’s teeth. Shark’s teeth are elegant, silky, shiny and smooth. They come in all shapes, sizes, colors, textures, and tones. Just like people with Parkinson’s disease, all the teeth are totally unique and full of character. The teeth are technically a waste product of discarded chompers that are fossilized over long periods of time. Some are black, brown, gray, speckled, multi-toned, sharp, dull, serrated, or pointed.
I can’t explain the connection that I have to these tiny but beautiful pieces of art. Nature and time have created a cornucopia of remarkable masterpieces. Some pieces are almost gem-like, worthy of display and adornment. Often, their beauty is overlooked, underappreciated, and cast aside because beachcombers fail to recognize what is right in front of them. They fail to identify the magnificence and uniqueness of the diversity of each and every piece. The teeth are results of wear and tear from years of natural forces, while being tumbled through swirling water and abrasive sand. The varieties of sharks combined with the range of conditions affecting the teeth, create a product that is easily underappreciated and often overlooked.
Diversity, it is to be respected and upheld, for without diversity, the world would be boring and tasteless. The splash of colors and striations throughout some of the teeth are due to minerals and variations from the water’s varying pH level. These imperfections in the teeth, add beauty and character, plus they make each tooth memorable and one of a kind.
It takes a fresh perspective to look at something so common, with new eyes. We must look deep and see what is there and not be influenced by what others may want us to see. Some will try to influence what we see. Most of us know what is right and what is wrong. Appreciating these teeth took realization and a level of understanding. I see their beauty even if some do not.
Trust me, I am not a reminder service, nor am I a medical professional, but with the soaring heat of summer, it may not be a bad idea for a few reminders to help keep your life a little safer:
- If you are taking Sinemet, pay close attention to direct sun exposure. Make sure to wear sunscreen and protection from the rays, so as not to burn.
- Check your medications for sun exposure side effects and talk to your neurologist and dermatologist about any moles, rashes, burns or bumps that are irregular, uneven, painful, changing color, or simply suspicious.
- Some of us with Parkinson’s have the challenge of self-regulating our body temperature. It is so vitally important to keep cool and to monitor if the sun is having any impact on you.
- Keep hydrated! I had a friend who was only drinking a little more than 4 ounces a day. When I found out how little he was drinking and he came back to hydration, my wife and I were amazed to see voice improvement, better cognition, better balance, and I dare say, a healthier look to his skin.
- If you have a pet or child, never leave them in a closed car without cool air blowing and water access.
- Don’t forget that many surfaces like concrete, blacktop, decking surfaces, and even wood can get blazing hot, making it very uncomfortable for paws and bare feet. If you have poor circulation or neuropathy, this could be very important.
- Be aware of your surroundings and your comfort always. Keeping aware will avoid some of those sun hazards.
- People with Parkinson’s are notorious for being deficient in vitamin D. Sunlight is great to help replenish your vitamin D level but pay close attention to too much direct exposure. Choose your time of day outside wisely and monitor your local weather for the safest time to walk your dog or go to the garden.
- Don’t forget a hat and sunglasses!
- Be sure to remember to always crack open at least one car window so you don’t return to a blistering seat and stifling air!
Use good, safe, solid, logic about being in the sun at its least intensity and keep cool!
On August 24th, in Philadelphia, PA, hundreds of people with Parkinson’s and those who care about them will be meeting together at the Davis Phinney Foundation Victory Summit.
I have attended four Victory Summits and find them to be informative, inspiring, uplifting, and empowering. Registration is free. If you are on the East Coast or within a few hours of Philly and are dealing with Parkinson’s disease, I encourage you to learn more about The Victory Summits and learn more about what the Davis Phinney Foundation does.
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.
WPC Kyoto 2019
I have had the good fortune to attend 3 World Parkinson Congresses: DC, Montreal, Portland. The 5th Congress has been taking place in Kyoto, Japan #WPC2019. I have been listening to their official podcasts and highly recommend the first three days of podcasts: They are quite well done! The @WorldPDCongress brings the world of people together. This Congress brings together 55 different countries and 3000 plus attendees. I had the honor to be an official blogger for the 2016 Portland event. It is an amazing congregation of people with Parkinson’s, neurologists, researchers, care partners, sponsors, exhibitors, and demonstrations of what people around the world are doing to help themselves. For 4 full days, there are events presentations, panels, and discussions to inform, educate, and inspire. This podcast is hosted by Larry Gifford @ParkinsonsPod
Please take the time to listen to all the podcasts! This link starts with WPC Day 1 and the rest of the recordings will follow in succession.
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.