Category Archives: Conferences & Symposiums

A Day of Parkinson’s Education in Williamsburg

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.

Knowledge is Power - A Soft Voice.com

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.

2019 APDA Education Day in Williamsburg VA this Saturday 9/28

Online registration is still open until 9/25 for the 2019 APDA Virginia Education Day being held next Saturday 9/28 (9am-4pm) at the DoubleTree Williamsburg. April Is Disease Awareness Month!

Registration is only $25 for this day long event which includes speakers on a variety of important topics including:

-People who have Parkinson’s discussing how they live well with Parkinson’s

-Neurologists discussing how to people can live well with Parkinson’s

-Caregiver discussing tips and tricks

-Exercise panel discussing PWR!, Rock Steady Boxing, Tai Chi. Yoga and BIG

-Parkinson’s Research

-Brain Fitness

-Nutrition

and much more!

Click here for more information and to register!

 

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.

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!

Conference Nirvana and The Real World!

In 2003, I attended my first Young-Onset Conference in Atlanta where I met some great people and made lifelong friends. In 2004, I was asked to join the planning committee right after the Minneapolis meeting. In 2005, I would help organize and arrange conferences each in a chosen city until 2008: Phoenix, Reston, Chicago, and Atlanta.  Attendance was strong, and the Conferences brought in people from all over the world. The Conference for many of us turned into a large family get together.

The events were not only planned by the committee, but each member would present at the Conference as well. We were encouraged to live by example and to motivate the crowd. Our dynamic group of people with Parkinson’s covered an array of topics of how to live well with the disease.

When you bring hundreds of people together with Parkinson’s disease (PD) in one place, everything Parkinson’s seems normal and the world outside our hotel seemed odd. A peace came over us, where explaining ourselves to why we were doing what we were doing wasn’t necessary. Parkinson’s was the normal for this closed and safe environment and we all understood one another. A symptom of the illness or a drug side effect needed no explanation, but if it did it wasn’t drudgery to relate.  An overwhelming feeling of belonging and being part of something that was changing people’s lives provided us an amazing opportunity. When the final day of the event came around, parting was hard for us all.

The medical information was helpful, but the living knowledge provided to us was empowering. What really made the difference in most of our lives was the freedom that we felt inside those walls and the relationships that we would take away. It takes a special event to recall so many joyous encounters around what could have been a maudlin event—but it was not.

The unity of these participants was unlike any other that I had ever seen. The newly diagnosed were being encouraged by those who had a little more experience with the illness. For many of the attendees this was there first conference devoted to Parkinson’s as well as the first time meeting another person with the disease. This was an important moment for thousands of people with Parkinson’s disease.

This was an event sponsored by a large foundation, organized largely by a committee of 7 or 8 Parkinson’s patients, which focused on educating, empowering, and enriching those diagnosed with PD. Most of the lectures were from those living with the disease and not those attempting to treat this disease. Who better to advise on how to live with an illness than those living with the experience?

There is a place for medical conferences where the program is filled with medical expertise and experts related to the illness of choice. Far too often, I see conferences about living well or living better, but the conference organizers neglect to include the ones who are living with the condition. The ones who are living well with the disease are the experts, in my opinion.

A doctor can tell you about research, medications, studies, and possible medical procedures, but they can’t tell you what it is to live inside our bodies. They can speculate and imagine, but it just isn’t the same. A conference for people with a specific illness, like PD, ought to be planned by the ones who understand it the most.

Here are some online live events you should catch this week!

From IStockPhoto

Be sure to attend the first live online Davis Phinney Foundation Victory Summit this Friday 8/10/18 at 10 AM PST or 1:00 PM EST! I have attended several of their summits and found them to be very educational and informative. Use this link to register today: https://www.davisphinneyfoundation.org/live-broadcast-registration/


This Saturday,8/11/18 join the Parkinson Voice Project for an online lecture from Sarah King, PT, DPT who will be discussing “How To Create Your Personalized Parkinson’s Plan of Attack“. Learn about this lecture and more speakers in their ongoing lecture series. The lecture begins at 10:30 AM Central Time or 11:30 AM Eastern Time. Here’s how to register and learn more about the lecture series: http://www.parkinsonvoiceproject.org/ShowContent.aspx?i=2141

Community Update – Events and Online Resources

Parkinson’s Awareness

ParkinsonsDisease.net Reaches 10k Likes!

If you follow this blog, you know that I have been actively posting on the new Health Union site, www.ParkinsonsDisease.net. What you may not know is that this site recently made a rapid climb to 10,000 likes! Here’s where you come in—in honor of this success, you have the opportunity to vote for one of the fine charities below to receive a donation, if they win the vote count. Encourage your family and friends to vote as well. Vote today by clicking this link and scrolling to vote in the poll!

  • Parkinson Voice Project
  • Davis Phinney Foundation
  • Parkinson Association of the Rockies
  • Parkinson’s Foundation (National Parkinson Foundation/Parkinson’s Disease Foundation)
  • The Michael J. Fox Foundation for Parkinson’s Research

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Parkinson Voice Project – Parkinson’s Lecture Series

The Parkinson Voice Project has launched a lecture series which features Parkinson’s experts talking about topics affecting our community. They hold this lecture each month and it’s live streamed for anyone in the world to attend. They also archive previous lectures so you can watch the lectures that are of interest to you. Visit https://www.parkinsonvoiceproject.org/ShowContent.aspx?i=1876 for more information about upcoming lectures and view previous presentations which include lectures on wellness, physical therapy, cognitive challenges, making a Parkinson’s diagnosis, and Deep Brain Stimulation.

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Virginia Education Day – October 7th, 2017
If you live in or near Virginia, I hope to see at the Virginia Education Day in Williamsburg on October 7th, 2017. I am a member of the planning committee. The event is being held at Fort Magruder Hotel and Conference Center. The Education Day is has a diverse mix of wellness information including presentations by physicians, people with Parkinson’s, caregivers, and allied health professionals. Click this link to see the conference brochure and click here to register for this event.

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Living Well Conference 2017 – Parkinson Foundation, Western Pennsylvania

Join Angela and me in November in Pittsburgh for their Living Well Conference 2017, where we will be presenting and facilitating two breakout sessions. Read this link for all the details. We would love to see you there! We will also be selling and signing our books and audio CD collection at both events—we hope that you can make it!

I’m Back and Ready To Work–Lots of News to Come In the Near Future!

Well, I am back from a brief hiatus! I am excited to say that I have loads to blog about and share–as well as a few surprises, coming soon!

If you are in the Northern Virginia area, we would love for you to join Angela and me for our book signing at the Fair Oaks Barnes and Noble bookstore in Fairfax, Virginia on March 30, 2017 at 4:00 PM EDT! We would love to show you our latest book, Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit! Hope that you can join us!

Thank you for reading my blog and your continued readership.There is much more in store–just you wait!

Thanks, Karl

Anticipation is Palatable!

The new proof of our second book arrives in the next few hours and I feel like a kid on Christmas Eve awaiting Santa’s arrival!

Dealing and Healing with Parkinson's Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit

Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit

If the proof checks out and it looks as good as I think it will, book number two, Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit by Angela and Karl Robb, should be available for shipping on November 1st, 2016!

Dealing & Healing is a workbook for everybody and anybody dealing with a challenge in their life! Physical, emotional, spiritual–something in this book will resonate with you! Filled with over 100 eye-opening, expansive, and easy to follow exercises, devised for both individual use as well as support groups of all-kinds. This book picks up where our first book, A Soft Voice In A Noisy World: A Guide To Dealing and Healing with Parkinson’s Disease, leaves off! This fresh new workbook offers some new tools to your ever growing toolkit. Get ready, get excited, and get Dealing and Healing!

Dealing and Healing is available now for pre-ordering on Amazon.com and will be available wherever you like to buy your books, on November 1st! Stay tuned for the release and upcoming book signings across the country–if you would like to host a book signing, lecture, or meet and greet, please contact us at asoftvoice@robbworks.com.

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