Category Archives: Inspiring Stories

Rock Steady Boxing is making a difference in my Parkinson’s disease!

Rock Steady Boxing and my coach, Alec Langstein (https://rocksteadynova.com/), have made me stronger, fitter, and quicker. There is a definite and noticeable improvement in my mobility, agility, and balance. When I am hitting a heavy bag, I will hit it hard but when given the chance to hit with someone wearing focus mitts, I always hit harder, faster, and with more intensity. There is just something about the human interaction that makes me want to step it up a little and to put in even more effort. My coach and my boxing mates motivate me to do my best and to push myself to excel.

Rock Steady Boxing, three days a week, has made a very noticeable difference in my stamina, my overall condition, and my life. I am in the best shape of my life, if you don’t count the Parkinson’s disease—it sounds hard to believe, but it is true.

Finding What Works For You

Motivating words and cuing from my coach, my care partner/spouse, or even a concerned bystander can help me to work harder and find strength that I didn’t know was there. Music moves me, makes me box harder, focus better, and picks up my spirit, all at once. Digging deep down for strength has taught me that if I push myself, just a little more, I may be able to do a little more than I thought.

I encourage everyone with Parkinson’s seeking inspiration, motivation, and an exercise program to check out Rock Steady Boxing in their area. Finding that right exercise, therapy, or practice that feeds your spirit, is so important. Don’t wait or stop trying to find what works for you—time is precious!

Washington Nationals Win MLB World Championship!

Adversity

Washington Nationals Fight Finished @Nationals

Image by: Washington Nationals World Series Champions @Nationals

Epic sports comeback stories are reminders for us all that sometimes the underdog wins. When in the face of adversity, when pressed, the team that you discount will surprise you and overcome the odds. Sports teams, like the Washington Nationals Baseball Team proved so many supposed experts and sports journalists wrong. The Nationals won the wild card series and went on to take the World Series from the Houston Astros in game seven.  The Nationals (@Nationals) future looked bleak after the Astros won game five. Somehow, what looked like an unfathomable task, turned around.The team rallied to fight back and won to go on to the definitive game seven and win away from home.

Sports emulates life. Washington celebrates the accomplishments of the Washington Capitals hockey team, the Washington Mystics women’s basketball team, and now the Washington Nationals. All three have brought the DC area great excitement and energy. This remarkable baseball team found a win just when it needed it and thrived when their backs were to the wall. Like magicians, they somehow manifested what they needed at just the right time.

“Sometimes, it’s fun to do the impossible.”

We all face challenges in our lives that look insurmountable but if we hold on to the inspiration and belief that we can do something amazing, we may very well go beyond our limits. Walt Disney said, “Sometimes, it’s fun to do the impossible” and that’s what the Nationals achieved last night.

Congratulations to the Nationals for their amazing win!

Upcoming Victory Summit in Philadelphia

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.

World Parkinson Congress (WPC) 2019 in Kyoto!

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.

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.

The Power of an Amazing Quote

Powerful words stay with us and in a world of sound bites, there is no doubt that a good quote leaves a lasting impact. Here is my video on The Power of an Amazing Quote. Words inspire, motivate, and invigorate. Good quotes are memorable and timeless.
I hope that you enjoy this reading! Feel free to share it – if you find this to be helpful!
Thank you!
– Karl

Parkinson’s Disease Awareness Month 2019

2019 Parkinsons awareness month shirt 1

Parkinson’s Disease Awareness – Together WE are ONE

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

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

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


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

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

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

Health Union’s Living With podcast features Karl and Angela Robb

Angela and I have been contributing articles to ParkinsonsDisease.net for almost two years. Health Union (HU)’s mission is to inspire people to live better with challenging health conditions. The HU Living With podcast this week is from an interview we did last year at their headquarters.

You can find the podcast on:
Health Union Living With podcast

Health Union’s Living With podcast

In this podcast, we discuss relationships, living well with Parkinson’s disease, and a few tidbits that we have learned. Angela and Karl Robb have been married over 20 years and Karl has had Parkinson’s disease for over 30 years. Hear their outlook on illness and keeping positive.

Messages to Ponder for 2019

Inspiration can come in many forms, be it words, photos, audio, or video. In the coming year, this site will incorporate a wider use of these tools to add to the informational and entertainment aspects of this site. I truly hope that if you or someone you know is seeking information, support, inspiration, or a fresh perspective on Parkinson’s disease  and other chronic conditions, that you might consider sharing this website with those looking for articles on living with illness. The archives on this site contains nearly 400 articles to read on Parkinson’s and living with illness. If you are seeking more content, check out my recent articles on ParkinsonsDisease.net.

The following is a condensed video of many of my messages from my 12 Days of Christmas. I hope that you enjoy it and feel free to share it with anyone that you think might find benefit:

 

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