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:
Sure it looks like fun, but watch the videos and you might be playing with a potential fire hazard, a product that is sending many to the emergency room, and a powder keg of possible problems. I totally believe that taking a calculated risk now and then keeps life exciting. If you are going to take any kind of risk, make sure that you have looked at all the angles! If the choice is to ride the incorrectly named “hoverboard”, at least put on a helmet, padding, ride on a semi-soft surface, and try to be prepared to fall, rather than expect to immediately master it.
If you have Parkinson’s disease and treasure the faculties that you have, this device, in the current state, may not be the right choice for you. If you desire the ER or an unexpected doctor visit, then spin the wheel, but I’ll wait for another more reliable iteration of these products. I prefer a less risky, less self-com-busting, more stable device that admits that it does not hover (it rolls). Here’s wishing you and yours a very Happy New Year and I will see you right here in 2016!
Last week, I went to one of my favorite local hangouts for a bite to eat. I had been great the whole day but my meds decided to try to get me dyskinetic. The meds won out for a brief time and although I didn’t notice if anyone else saw my twitching and shaking, it had to happen at the most inconvenient of times. It rose it’s ugly head at dinner, but why not?
While waiting for my order, a gentleman I never met came over to ask me a question. Before he could even get the question out, I explained to him that I have and had Parkinson’s disease for over 20 years and what he witnessed was a brief episode caused by a medication side effect and not the disease itself.
This very friendly man told my wife and I that he was curious because he was back in school in his mid-forties to medical training as a physician’s aide. I loved his curiosity about the Disease and the meds. This was a real opportunity to educate and inform someone in the medical community about what PD is and isn’t. When these opportunities arise, I strongly urge you to take full advantage to teach those who understand PD. You can leave a lasting impression and make a powerful impact.
A Soft Voice in A Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease – 12/12/12 Book Launch!
To all our friends, followers and fans – I am excited to announce that today/Wednesday 12/12/12, I’m officially launching my first book: A Soft Voice in a Noisy World: A Guide to Dealing and Healing with Parkinson’s Disease.
As today is 12/12/12, I’m asking you to help promote the book by doing one or more of the following to help us get the word out about the book.
- Join our 12/12/12 book launch on Wednesday, December 12, 2012. Let’s make A Soft Voice In A Noisy World the most talked about book on Parkinson’s Disease!
- Please buy the book on Amazon (paperback and Kindle), Smashwords (lots of eFormats), Createspace, Kobo, or Barnes & Noble (Nook).
- “Like” us on Facebook, Smashwords, Createspace, Kobo, Barnes & Noble (Nook), Amazon (paperback and Kindle), or Pinterest.
- Share a mention or link via email, Twitter, Linkedin, Facebook, or by some other social media site to 12 or more friends who may have interest in learning about this book.
- Please take a moment to read a portion of this book and comment, review, rate, or blog about A Soft Voice In A Noisy World at any, some, or all of the sites listed above.
- Email us comments, suggestions, thoughts, or requests for speaking engagements to asoftvoiceatrobbworks.com.
- Help us get to 12,000 followers by 12/24/12. Follow us on Twitter@asoftvoicepd.
I hope you enjoy my book and find health and hope!
Join me, Karl Robb and my guest host, Angela Robb, as we answer questions and discuss issues impacting Parkinson’s disease(PD) patients, caregivers/care-partners, and those who want more information about living well with PD. Thanks to Robert Rodgers (www.parkinsonsrecovery.com) for the chance to guest host. Feel free to submit a question before the web show by logging into the web link and password below or phone your questions in live with the provided information and code below, on the day of the show (Sunday, December 9, 2012 at 5:00 PM Eastern Standard or 2:00 PM Pacific)
See the online and phone information below for show details:
Online Event password: karl2012
Primary dial in number: (206) 402-0100
Secondary dial in number: (323) 476-3672
Dial in password: 200414#
I tweeted a story this morning that claimed studies prove that organic foods only real benefit is that they are lower in pesticides. As someone with young-onset Parkinson’s disease (PD) and knowing that studies show that PD results from exposure to pesticides, I would think the article would be far more pro-organic than it appears.
If you can reduce your exposure to any toxin, do it! Do you think organic prices are worth reduced pesticide exposure ?
I’d like to know what you think. Please read the article above and share your thoughts on organic versus conventional farming.
If you follow my blog, I thank you for all your support and I apologize for not posting more often. I am excited to announce that my book is near completion and will be released within the next month. More coming soon!
Keeping focus and staying mindful is a daily challenge for most of us but add chronic illness to the equation and the challenge gets that much harder. With all the emails, voicemails and other electronic messages, signs, advertisements, phone calls, and various shout outs from the world, distraction of thought is so easy.
Finding a peace within ourselves comes much easier when we are able to separate ourselves from the frenzy and din of modern technology. Taking a few moments a day of quiet time for yourself can ease tension, quiet the mind, and clear your thoughts. A few minutes of peace is like a reboot for the brain.