Category Archives: Conferences & Symposiums

I’m Back and Ready To Work–Lots of News to Come In the Near Future!

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!

Thanks, Karl

Anticipation is Palatable!

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!

Dealing and Healing with Parkinson's Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit

Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook for Body, Mind, and Spirit

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 asoftvoice@robbworks.com.

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 Questions with Polly Dawkins

Meet the people leading the Parkinson's organizations!

Meet the people leading the Parkinson’s organizations!

 

Introducing, Five or More…, a series leading up to the World Parkinson Congress 2016 in Portland–meet some of the Executive Directors and leaders in the Parkinson’s Community as they answer a range of some required questions and some optional: Polly Dawkins of The Davis Phinney Foundation, was kind to agree to go first.

Here are eight questions. Five of them are encouraged that you answer. The remaining three questions are your choice whether you want to provide an answer or not. Thank you for being the first to try this experiment!

I have known Polly since she started at The Davis Phinney Foundation and she has been a loyal follower of the blog.

Required questions:

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

Do I have to choose?  Love Asian food and my favorite is Japanese.  Since that’s not the on list…if it’s a great Mexican place (like the food in the Yucatan Peninsula), that’s the food I’d choose.  The spicier the better.  And, Thai would be a close second.

What do you like on your pizza?

Grilled fennel, roasted garlic and mushrooms on an olive oil and light cheese base, topped with fresh arugula and shaved parmesan.

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

Summertime is the only time of year for me.

How many World Parkinson Congress events have you attended?

Montreal was my first Congress and Portland will be my second.

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

Meeting with members of the Parkinson’s community in person, seeing old friends with whom we have worked, creating new partnerships/collaborations in the community and spending time with the Davis Phinney Foundation Ambassadors.

Optional:

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

I have the best job ever.  You probably already knew that.   I love to swim and ride my bike.  You probably knew that, too.  Something new and different?   I love spending time in Latin America and speaking Spanish.

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

Chile, Argentina, New Zealand, Norway (when it’s warm) and Botswana.

What is the Davis Phinney Foundation working on that you would like to tell us?

In addition to working on bringing The Victory Summit to Sacramento, New Orleans, SW Florida, Nashville, Durango and other locations yet to be announced, we are currently working on developing new content and launching a new website for the Davis Phinney Foundation, which should be up and ready by the time we’re all gathered together in Portland.

As well, we are really proud of the quality of life research we’ve funded and what that has meant in terms of changing the way people approach living with Parkinson’s.  As well, we are considering ways in which we can invest in quality of life research that have more direct impact on our programs and the Parkinson’s community as a whole.

Thanks again, Polly!

 

 

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.

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

The 2016 WPC’s New “Book Nook” Will Bring Readers And Authors Together!

Check out WPC's Book Nook

Check out WPC’s Book Nook

I have been fortunate to have attended 2 World Parkinson Congresses, Washington and Montreal. Both events were outstanding in information and learning about what is new in the world of Parkinson’s disease.

Join us at the 4th World Parkinson’s Congress in Portland, Oregon this September 20-23, 2016 —Register Now!

If you didn’t already know, registration for the World Parkinson Congress (WPC) is NOW Open! This September an international contingent of scientists, activists, experts, vendors, writers, researchers, medical experts, body workers, and so many others who focus on Parkinson’s disease will convene in Portland, Oregon for this huge event. For my fellow Americans, I encourage you to take advantage of the fact that the #WPC2016 is in the US, once again and in the great city of Portland. The WPC only happens every 3 years! This is a wonderful opportunity to learn what is happening around the globe and meet many of the world’s leaders in their field. Click here to learn more or to register today!

WPC Book Nook
2016’s WPC will be providing something new this year with their Book Nook! Meet some of the authors behind many of the Parkinson’s books that you have read or plan to read. Some authors may do a reading as well. If you are an author writing about Parkinson’s disease read about the requirements for submitting your application for approval. This is a great opportunity to bring authors and readers together! For more information, click here.

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.

Summer color and flavor
Summer color and flavor

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!

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