Category Archives: World Parkinson Congress 2016

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!

 

Five or More… with Robin Elliott, Executive Director & CEO of PDF

Meet the people leading the Parkinson's organizations!

Meet the people leading the Parkinson’s organizations!

I am so pleased to have Robin Elliott, the Executive Director and CEO of the Parkinson’s Disease Foundation answering my questions on my blog today. This is right before the World Parkinson Congress  in Portland, Oregon, where thousands will congregate to discuss, share, convene, and educate one another on the latest research in this illness.

Here are eight questions. Five of them are strongly encouraged that you answer them. The remaining three questions are your choice whether you want to provide an answer or not. Thank you for participating.

Required questions:

 

Chinese, Thai, Italian, Mexican, or Ethiopian—what is your favorite cuisine?

Mexican

What do you like on your pizza?

Sausage

Of the four seasons, which is your favorite time of the year?

Spring

How many World Parkinson Congress events have you attended?

Four (including this one in 2016)

What are you looking forward to most in Portland, site of the WPC 2016?

Riding a bus tour (if time allows) of the one major city in America that I have never visited

Optional:

 

Tell us something about yourself that we might not know about you that you would like to share.

I love to play the piano — preferably in private — and the church organ

Where would you like to go, that you have never been before?

Australia and New Zealand

What is the Parkinson’s Disease Foundation (PDF) working on that you would like to tell us?

PDF ‘s new program of research and education on the special problems that are confronted by women who have Parkinson’s Disease

Five or More with Todd Sherer, CEO of The Michael J. Fox Foundation

Meet the people leading the Parkinson's organizations!

Meet the people leading the Parkinson’s organizations!

Five or More…

My thanks to Todd Sherer, PhD, CEO of The Michael J. Fox Foundation (MJFF) for contributing to my question/get to know you experiment.

Here are eight questions. Five of them are strongly encouraged that you answer them. The remaining three questions are your choice whether you want to provide an answer or not.

Required questions:

Chinese, Thai, Italian, Mexican, or Ethiopian—what is your favorite cuisine?

Italian – See next answer

 

What do you like on your pizza?

I’m a New Yorker.  Plain cheese, bent with the oil dripping onto the plate

 

Of the four seasons, which is your favorite time of the year?

Spring because baseball season starts. Go Mets!

 

How many World Parkinson Congress events have you attended?

3 – DC, Scotland, and Montreal

 

What are you looking forward to most in Portland, site of the WPC 2016?

Unfortunately, I am unable to attend this year but am looking forward to hearing all the reports from the MJFF team.  I always love the interactions on the exhibitor floor and hearing what people are really interested in and concerned about.

 

Optional:

Tell us something about yourself that we might not know about you that you would like to share.

I’m extremely scared of heights.

 

Where would you like to go, that you have never been before?

Hawaii – how about they have the next WPC there so I can go?

 

What is the Michel J. Fox Foundation working on that you would like to tell us?

We are working really hard to develop better diagnostic tests and ways to monitor disease progression through our Parkinson’s Progression Markers Initiative (PPMI) .  These measures are critical to allow the field to test new disease-modifying treatments – with the potential to slow the disease.  I’m excited that all the data from this study is made available to the research community in real time at http://www.ppmi-info.org.

 

 

World Parkinson Congress’s Video Is Ending Soon–So vote this week!

Pick your favorite video!

Pick your favorite video!

The top 12 videos have been selected, now it is the people’s choice to decide who will be crowned this years winner!

Be sure to see the videos and cast your vote by clicking  here: http://www.wpc2016.org/page/top12

Shoes, Coffee, Advocacy, and WPC 2016

First thing:

I am NOT a paid sponsor nor have I been compensated for these comments:

I guess you could call this a “footnote”–okay, bad joke, but I think some of you with foot problems and balance issues, might just find benefit in trying these shoes. They are the cost of a good running shoe and they have a return policy if the shoes don’t work out: My only mention of these shoes here is because I have found them to be so comfortable–period. My wife and I recently discovered these

Comfort and Stability

Comfort and Stability

running shoes made to accommodate for more space for a wider foot. We each got a pair–she loves that her heel doesn’t hurt and I love the comfort and flexibility that it allows my toes. I can say that these are the most comfortable shoes that I own!  I just think this product should be known. I haven’t sold out and I won’t sell out. I will only share products that I use, find great benefit, and feel that they may have a positive impact on your life. The shoes came from altrarunning.com.

Second Thing:

I want  to commend my friend, Sonia Gow on organizing her first Parkinson’s Cafe! Her event was a smashing success as over 50 people in the Fairfax, VA,  area attended. The event was like a free-flowing support group and a great opportunity to share and catch up with friends. We are so lucky to have Sonia’s passion and vision for helping the Parkinson’s community so close by. Check out her site at  www.parkinsoncafenetwork.org. to learn more.

Third Thing:

My friend Jean Burns is bringing awareness to some very important concerns involving clinical trial participant and hospital policies. After you have read this, share it with friends and family. This is an eye-opener. Here is the article in US News World Report.

Fourth Thing:

The 2016 World Parkinson Congress registration deadline for discount is nearing (July 5), so register soon. Don’t forget about visiting the author Book Nook and Wellness Way while you are in Portland, Oregon. This event only happens every 3 years and as an international event in North America, this is a great opportunity to learn from doctors, researchers, practitioners, and patients across the globe. This is a wonderful opportunity to meet and learn  from neurological experts from all over the world. Go to WPC2016.org to learn more.

Hear my interview today, with DJ Andy at 1PM EDT May 11, 2016

Interview w/ DJ Andy

Interview w/ DJ Andy

I had the privilege to speak with Andy Butler AKA, DJ  Andy, about Parkinson’s disease. Listen in on our conversation and hear my eclectic selection of music–possibly a song or two you’ve never heard. Andy was very kind to allow me to program the music for our discussion. I hope that you enjoy it. Here is the link: http://www.radionomy.com/en/radio/radio-parkies

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

April is Parkinson’s Disease Awareness Month!

Spread the word!

Spread the word!

If you didn’t know, April is Parkinson’s Disease Awareness Month!

Also, if you didn’t know, in September, the World Parkinson Congress 2016 (WPC) meets in Portland, Oregon where thousands of people with the illness, doctors, researchers, authors, and other experts in their fields will convene to meet and discuss what is new in the fight against Parkinson’s disease. If you haven’t looked into going, I would highly recommend that you do. This will be my third WPC event. For more information on the event, visit WPC2016.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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