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!

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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

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