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.
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:
Checkout the artistic innovators at http://www.forgingresilience.org and assist them in creating art for the 4th World Parkinson Congress in Portland, Oregon this September 20-23, 2016.
Provide them with a photo and/or a quote for their art installation. A tree of resilience with thousands of leaves with each leaf representing a quote or photo. It will be on view. Share your story and be represented on the tree (see photo on their site) by providing your information by Friday, April 22. If you or someone you know is touched by Parkinson’s disease, please let them know about this project.
Visit their website for details about how you can be part of this event – http://www.forgingresilience.org
The time has come to demystify the word reiki (ray-key). “Rei” means light and “ki” or “chi” means energy. Many of you who follow my blog, know how important this complementary therapy/energy treatment is to me and just how it has changed my life for the better.
Just this weekend, friends who have known me for over 15 years, were amazed to see me bring a halt to my dyskinesia just by using the practice of reiki. One dear friend, who was in agonizing back pain, came to my wife and I for a treatment in hope of some relief, to which she got. Reiki doesn’t do everything you need and it isn’t a cure—it is one more tool in your toolbox. We are all unique and the code that works for me may not register for you, but isn’t it worth investigating? Everyone can use one more tool!
Reiki is a practice with ancient roots. The reiki method/protocol I use was developed in Japan over a hundred years ago. The reiki that I practice comes out of a lineage call Jin Kei Do which combines a practice of Qi gong, meditation, and the use of touch to transfer universal energy.
Reiki can be effective for: balancing one’s personal energy, reducing fatigue, lowering anxiety, helping to get a better night of sleep, reducing pain, and a assisting a variety of other challenges. The practice is performed by nurses and some doctors in over 100 hospitals in the United States. Slowly, this treatment is gaining the credit that it deserves.
How is a reiki session performed? A reiki treatment or session is very simple. The client, unlike a massage, remains fully clothed and either sits in a chair or lies on a massage table on their back while the practitioner lightly touches or even works inches off of the body. The client does remove their belt, shoes, and eyeglasses and gets on the table or chair and is asked to relax and to just breathe. The practitioner very gently and lightly touches the head, chest, stomach region, legs, back, and feet. The client may feel heat, cold, tingling, or nothing at all. Often, like my first time with reiki, I fell asleep on the table, for over an hour and woke up feeling much better and more refreshed than when the session began–that is what started it for me almost 20 years ago. That is why I decided to learn reiki for myself. I was skeptical, until I actually experienced it. Once the session is over, the client is gently awoken, given a drink of water, and sent home. Benefits may last weeks until the next treatment. Sessions can last as long as 1.5 hours or as short as 15 minutes and usually are about the price of a massage.
The beauty of a level 1 reiki class is that it is all about self care, so you can learn to perform reiki on yourself, whenever you choose. If you decide you want a better understanding of this energy treatment there is level 2,3, and mastership, which in my lineage is a 1 year training program. I suggest going to your practitioner/teacher to receive the benefits of their treatments and to experience it before, you commit to learning it yourself. The reason I decided to become a reiki master is that I saw the benefit of reiki help my Parkinson’s so I wanted to teach reiki to others with Parkinson’s. In order to be able to teach reiki, one must become a reiki master (in our lineage).
Combined, my wife and I have worked on at least 100 people with Parkinson’s disease and their carepartners. We have seen benefit from these treatments, even when they sometimes can’t see the results themselves. The first thing we notice is a clarity in their eyes, sometimes an improvement in clarity of mind, better mobility and flexibility, or just a release of tension and anxiety. I also have seen smiles and a softening of the face muscles.
In 2013, at the World Parkinson Congress (WPC) in Montreal 2013, I had the privilege to work on 9 people with PD, and 8 of 9 expressed a benefit from the treatment. I even saw an improvement in the person who didn’t see a difference. They were more relaxed and appeared more refreshed after the treatment. Some people don’t verbalize their experiences with reiki as fully or clearly due to this new sensation.
My wife, Angela, a reiki master, as well as many other experienced reiki masters, massage therapists, yoga teachers, and I plan to work at WPC 2016 in Portland, Oregon at the Wellness Way area of the conference. Wellness Way is an area where you can experience therapies or just take a quiet respite and enjoy a moment or more for yourself.
I encourage you to explore reiki and other such therapies to see if they might assist you along your journey as you look for relief from stress, anxiety, or fatigue. I encourage you to find a referral for a reiki practitioner near you to offer you a free sample or trial period to see if you like it. Please make sure that they are experienced, sensitive and aware about your condition.
Last night, I attended a viewing of Dave Iverson’s touching film Capturing Grace. The documentary chronicles the lives of a group of fellow Parkinsonians (Brooklyn Parkinson Group) and their transition into becoming dancers through the instruction of David Leventhal and the Mark Morris Dance Group. The film captures the indomitable spirit and drive of the group’s members and the rock solid bonds that unite them through the power of dance. The story leads from classes and rehearsals to the moving public performance that the group openly shares what they have learned and accomplished.
I was grateful to actually meet Mark Morris and David Leventhal and thank them for their contribution to the Parkinson’s world.
By the way, for you film directors and Hollywood hopefuls, don’t forget about the World Parkinson Congress’ video competition, now open for entry!
If you are an author with a book consider sharing it at the Book Nook event at the World Parkinson Congress in Portland! For more information on both of these exciting mediums, click here for more information about the 4th World Parkinson Congress.
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.
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!
As you probably know by now, the World Parkinson Coalition’s big event, the 4th World Parkinson Congress, is coming to Portland, Oregon in September 2016. Starting today and the first Tuesday of each month until September 2016 you can enjoy Portland Countdown, a podcast dedicated to important Parkinson’s topics and timely information. Hosted by Dave Iverson and Jon Palfreman, in this premiere #WPCPodcast, they interview Dr. Andrew Lees and discuss some history of Parkinson’s disease.
I found the podcast to be informative and refreshing in that Dr. Lees described Parkinson’s from a perspective unlike most doctors that I have encountered. I hope you enjoy it!
I am so honored to have been chosen as a WPC blogger partner for the World Parkinson Congress (WPC) 2016 in Portland! If you haven’t been to a WPC event, I whole-heartedly encourage you to join us. Meet amazing people living with Parkinson’s disease, learn about the research and important work being done around the world. Held every 3 years, the Congress returns to the United States’ host city of Portland, Oregon for the 4th gathering on September 20 -23, 2016.
From WPC – “WPC Inc. has expanded its partnership program to the global community of bloggers in the Parkinson’s space. If you are interested in our WPC Blogger Partner program, email us at firstname.lastname@example.org.”
Having attended the Congresses in Washington, DC and Montreal, I can tell you the event is packed with information, inspiration, and an array of wonderful international presenters. Hear the most recent research on Parkinson’s and experience the multitude of therapies being used by people affected by the illness. Make new friends, learn about what’s happening in Parkinson’s, and explore a southwestern gem of a city. Watch for my posts and tweets about WPC announcements. I hope to see you there!