Category Archives: Conferences & Symposiums
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.
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 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!
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.
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
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
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.
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.
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!
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!
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!
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 firstname.lastname@example.org.
While in Portland,OR for the 4th World Parkinson Congress 2016 (#WPC2016), I visited several vendors and their booths. Here are some of the interesting products and people that I had the opportunity to encounter:
I had the pleasure of meeting and speaking with the creator and owner of the blog, The Shoe Maven (www.theshoemaven.com), Tonya Walker, at the More Than Motion booth. Tonya has been living with Parkinson’s disease since the age of 32. Not only is she a mother of a young son, a law professor, a wife, someone with Parkinson’s but also a clothing designer of her own cause-based fashion label (TSM Originals). I appreciate her strength, determination, and drive to make the community more aware. Her positive attitude and passion to make a difference shone through our discussion.
I spoke with Ms. Walker about her blog and her passion for sharing her journey, improving awareness about young-onset Parkinson’s disease, and her love for fashion. With over 120 pairs of shoes, I can say that Tonya blows away my measly 5 or 6 pairs. Tonya found benefit from DBS or Deep Brain Stimulation first by having the surgery on her left side in 2013 and then her right side in 2015. You can watch Tonya’s video at https://www.facebook.com/parkinsonsmorethanmotion/videos.
As I have shared with my readers for over 8 years, Parkinson’s disease requires a proactive pursuit to search for a combination/recipe of complementary therapies, medications, or medical procedures that work exclusively for you. No two Parkinson’s patients are exactly alike, and what may work for me, may not work for you.
Here are some useful tools that I found at the vendor exhibits that might be helpful to know about:
Global Kinnetics Corporation
Global Kinnetics Corporation just released The Personal KinetiGraph, a movement recording device to assist doctors in treating and managing their patients with movement disorders. The PKG Data Logger is a wrist-worn device that was recently FDA cleared for the recording of movement, associated with Bradykinesia, Dyskinesia and Fluctuations. The unit is a nice looking watch capable of providing important mobility information to your doctors. As of 2 weeks ago, the device was not yet approved in Virginia, but some states are currently using it right now. You may want contact them for information in your state at www.globalkineticscorporation.com.
I dropped by the LiftWare booth to try out their stabilizing handle and attachments for people having hand tremor and difficulty with a fork or spoon. The product worked well, appeared to be durable, and was comfortable to hold. If holding a fork or spoon is a challenge for you, due to tremor, I think LiftWare is worth investigating as an option. For more information go to www.liftware.com
I dropped their booth to take their upright walker for a test drive. My first spin in the walker took getting used to, but I did see the benefit of this device. Unlike many walkers, the LifeWalker keeps the user upright and at eye level, allowing for face to face contact. I found the units well-built at first glance and well designed. To learn more go to www.lifewalkermobility.com.
These are not product endorsements. I encourage you to do the research for yourself and make your own decision. I hope that this was helpful!
Here are some more of my photos from WPC 2016:
Last week, over 4000 Parkinson’s advocates, patients, researchers, speech pathologists, neurologists, authors, those living with Parkinson’s, carepartners/caregivers, family and friends, and those interested in Parkinson’s disease all convened on the beautiful northwest city of Portland, Oregon. #WPC2016, an event only held every 3 years (next to be held in Kyoto Japan in 2019), assembled news makers, scientists, doctors, and patient experts who discussed the latest information in Parkinson’s.
Vendors spanning the globe brought the latest in equipment, tools, medicines and procedures, and therapies for improving the lives of those living with Parkinson’s.
Due to flight delays and adverse weather, my updates have been delayed, but watch for my next post for more pics and my talk with the Editor of the blog, The Shoe Maven, the fashionable and inspirational Tonya Walker, as well as some other observations from this wonderful event.
Here are some photos: