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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.

Interview with The Shoe Maven – Tonya Walker and more from WPC2016

Tonya Walker on the cover of More Than Motion!

Tonya Walker on the cover of More Than Motion!

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.

LiftWare
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

LifeWalker
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:

A great crowd!

A great crowd!

lisalindatrolley

Keith, Mike, Lisa, Linda, Angela, and me in Portland!

johnbaumannwpc

Author, lecturer, John Baumann, my GoPro, and I!

karl-book-nook

Exploring the WPC2016 book nook and finding my book!

jackiepaulmewpc

Ran into my friends– fellow author, Jackie Hunt Christensen and her husband, Paul!

bevandmewpc

Ran into my friend, blogger,humorist, and author Bev Ribaudo (YumaBev – http://parkinsonshumor.blogspot.com/)

authorsoncouchwpc

Sharing a seat with my friends and authors Michael and Gretchen Church and behind us fellow authors James and Helen Buell Whitworth!

meandadolphowpcfixed

Great to see my friend, Adolfo Diaz!

Back from Portland–The 4th World Parkinson Congress (WPC)!

Portland Parkinson's Event!

4th World Parkinson Congress in Portland, Oregon, US!

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:

Sonia and a smaller Parky.

Sonia and a smaller Parky.

GLynis from New Zealand and me.

Dylis from New Zealand and me.

 

Saying "Hi" to Parky the Raccoon.

Saying “Hi” to Parky the Raccoon.

 

 

What a coast!

What a coast!

Great Parks!

Great Parks!

 

Make Art–Help Out ForgingResilience.org

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

Taking the mystery out of a reiki treatment.

 

Calm and Very Cool!

Calm and Very Cool!

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.

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