Category Archives: Education
A Soft Voice In A Noisy World Book makes Healthline.com’s List of Books That Shine A Light on Parkinsons!
I was so surprised yesterday, when I came across this article from Healthline.com. I just discovered it, for the first time! They compiled a list of 11 Books That Shine A Light on Parkinsons. I am so honored to be on a list with such an amazing group of accomplished experts. This is a wonderful short list of really great books. Thank you, so much for adding A Soft Voice in a Noisy World to your list!
I believe that people come in and out of our lives for a reason. Often, they may have an important message to relay or an example to emulate. Whatever the case, if we pay close enough attention to those people that we encounter on a daily basis, we might just recognize what it is that we need to learn from the encounter.
As an avid amateur magician, I enjoy finding and visiting small local magic stores in cities that I may be visiting. I have been to close to a dozen small magic shops over the years, and I continually meet the most fascinating, entertaining, insightful individuals who also share my appreciation for the great art of performing magic. I met the owner of the last magic shop in North Carolina. This store is in Asheville, NC and is called Magic Central.
One of these amazing individuals that I was lucky enough to meet was a gentleman by the name of Ricky D Boone. Mr. Boone has been a professional magician for almost 40 years. Even more remarkable is the fact that Mr. Boone was born with a rare bone disease. His mother was told that he wouldn’t live to be 4. Ricky is 67 years old.
He is reliant on a wheelchair but to be in his company and to watch him work, all disability goes out the door. To see him perform magic looks so fluid and effortless. His humor and patter put him in control of the room, and the feeling is comforting. This is the sign of a true showman.
Ricky did card tricks for my wife and me. His sleight of hand ability was most impressive. I didn’t notice anything out of the ordinary. His patter was smooth and entertaining.
Ricky has received numerous awards and accolades for his performances and wonderful praise for his inspiring lectures. He is the recipient of two Emmy awards for a documentary on his life.
Ricky Boone is so much more than a magician. He is a model for us all in overcoming obstacles in our lives. He is a living miracle. Mr. Boone is a true inspiration to me, only after having the gift of getting to know him for about an hour. I am so grateful to have had the opportunity to meet a man with such spirit, grace, humor, compassion, and presence. Boone‘s charity, The Vanishing Wheelchair is an extension of his drive to help others break down barriers for the physically challenged, through the art of magic.
I am reading the book about Mr. Boone, The Four Foot Giant And The Vanishing Wheelchair by T.J. Shimeld. I am truly enjoying the book and plan to report more on this amazing man!
Ricky Boone is more than an entertainer – he’s an inspiration for us all!!
Dyskinesia is the uncontrollable jerky movement of hands, feet, or head. Often misunderstood, dyskinesia is a side effect of the Parkinson’s disease medication. Sometimes, this side effect is embarrassing, annoying, and at times even dangerous. Besides drawing attention to you from complete body writhing, dyskinesia can be exhausting. When I experienced 1 to 2 hour episodes of dyskinesia, I would feel like I ran a marathon without ever leaving home. Small spaces, sharp edges, and anything glass or breakable was a potential hazard. Trying to hold a drink with dyskinesia is a struggle, as your hand wants to splatter everything in sight but your mind screams, “Don’t do it!”
Tremor and dyskinesia are different. Unlike tremor, dyskinesia is bigger than a rapid twitch or tremble. At times, my entire body wiggled and flailed. It still happens, but only on an infrequent basis. Dyskinesia interferes with delicate and precise movements as well as simple everyday tasks, like making a sandwich, pouring a drink, or slicing bread. Someone with dyskinesia may struggle to brush their teeth, comb their hair, or just perform normal acts of daily living. Constant care and awareness is heightened to avoid food from flying everywhere.
People who don’t know me that well, who may see a brief shake, may laughingly call it a “dance”. Calling dyskinesia a dance may be meant to lighten the severity and discomfort of the event for all involved. Dancing is by choice—dyskinesia is not. I tolerate this comment but admittedly wish that those calling dyskinesia a dance could refrain from reducing a drug interaction that affects so many, to a recreational act. Dyskinesia in public is a teachable moment! Explaining to the uninitiated that this isn’t part of the illness of Parkinson’s has been a constant challenge.
Understanding dyskinesia from the non-scientific perspective isn’t that complicated, but trying to negotiate it, reduce it, and calm it, is the hard part. Never knowing when or where it might crop up can keep you on edge. It adds more stress—not what you need! Over time, I have gotten better about finding some control with the help of meditation, yoga, breathing, and reiki.
I realize that the distinction between tremor and dyskinesia probably in the scheme of things isn’t all that crucial, but what is important is the way either symptom is accepted by the public. Educating the public and demystifying the nuances of Parkinson’s can bridge the gap and clarify just what the public should understand about symptoms and side effects related to Parkinson’s disease.
I am so excited to announce that Angela and I will be guest blogging for the site, PatientsLikeMe.com. I look forward to sharing stories, insights, and information through my blog posts and joint posts with my wife and partner, Angela. Here’s a link to our first post, a Q&A session: http://bit.ly/2iJb0Ex
If you are unfamiliar with this website, here’s a quick description from the PatientsLikeMe About Us page:
We’ve partnered with 500,000+ people living with 2700+ conditions on 1 mission: to put patients first
Imagine this: a world where people with chronic health conditions get together and share their experiences living with disease. Where newly diagnosed patients can improve their outcomes by connecting with and learning from others who’ve gone before them. Where researchers learn more about what’s working, what’s not, and where the gaps are, so that they can develop new and better treatments.
It’s already happening at PatientsLikeMe. We’re a free website where people can share their health data to track their progress, help others, and change medicine for good.
Today, I have a slight deviation to my usual positive message for an expression of frustration and a plea that I strongly feel needs to be expressed. Consider this my contribution to advocacy:
Congratulations if you are watching and reading the world news and can remain calm. I for one, am unable to digest the vitriolic, bombastic, childish, unproductive, hateful, remarks coming out of our nation’s capital.
When I was a child in the 1970s and 1980s our greatest fear out of Washington was the threat of nuclear war. The fear generated countless classic Hollywood blockbusters and the story slowly faded in the background, until now. The threat was probably there the whole time, but it did not remain on the front page and now, in addition to the chaos of the Trump White House, the threat of climate change, and the shake-up celebrity marriages, it makes one ponder just what to do?
If you are dealing with Parkinson’s or any disease, this is the last thing that you need on your plate. Healthcare, doesn’t mean much, until you need to access it. Our Congress, Senate, and President are entitled to full lifetime health coverage for little or no cost. It is more than a nice perk. They don’t need to vote on a healthcare plan for themselves, they’re just fine, thank you.
As for the rest of us, who actually, could use affordable healthcare, many of us are left dangling in the wind and waiting for a solution. It isn’t pretty, sexy, or exciting, but it sure is needed. I have never seen our government at such a standstill as it is at this time. A stagnant Congress and a President in turmoil leave the millions of people in need of affordable care under undue duress and the inability to move forward.
I know of many friends and fellow people with Parkinson’s who have to make the decision to cut back on their grocery bill to be able to pay for this month’s medication bill. It shouldn’t have to be that way. Sacrificing from your already reduced food budget to eke out enough for some or all of your medications is a sad and scary trade off.
Therapy caps have created a huge problem in limiting coverage for appointments for those of us who benefit from occupational therapy, physical therapy, speech therapy and rehabilitation. These outpatient services keep many of us out of the expensive doctor’s offices, crowding hospitals, and keeping patients active in their community.
I wish I had an answer. I wish I wasn’t so frustrated. I wish someone would hear our voices!
Living with an illness is a constant reminder that every day is precious and full of meaning. Signs and opportunities present themselves, if you stay aware to recognize these opportunities.
Here’s a recent example about a small gesture that made a big difference in someone’s life, as well as my my own.
A doctor friend in Ohio had asked us to teach him reiki. We don’t normally drive a few hundred miles across the country to teach one person reiki , but this was an experiment that we needed to try.
When first arriving into town, we checked into our hotel and found a place for a late dinner. The restaurant, a college bar and pizza hangout, was lively and rocking. Our waitress was very friendly, hard working, personable young lady.
When the bill came, and it was time to pay, I felt compelled to reward her for her service and her hard work. I paid the bill at the table and slipped out to the parking lot to get back to our hotel around the corner. Just as we were about to get into our vehicle, we saw our waitress darting out of the restaurant, bolting towards our car. She had a huge smile and was beaming from ear to ear.
Quickly, the young lady, began to tear up as she told us of how her rent money had been stolen from a break in to her car. She said that her rent was due and that the tip that we had left her was going to make a difference. You could see it in her face how appreciative she was. For what I thought was just a kindly gesture and recognition of someone doing a great job, meant so much more to her.
What we perceive as one thing can be very different to someone else. I didn’t set out to make an impact on another, but I did. I received so much more from her story than I could have imagined.
Something that seemed so small at the time touched another and left a impact that I would have never expected. I feel so lucky to have had this experience.
I hope you too will try this experiment in rewarding and acknowledging those people who you encounter either with a kind word, an act, a smile, a gift, or a gesture. It is so important to recognize those around us and show our gratitude.
My many thanks to my friends at the Parkinson Voice Project in Richardson, Texas for this generous review of our second book!
Book Review by LOUD Crowd® Member Carol Brandle
TITLE: Dealing and Healing with Parkinson’s Disease and Other Health Conditions: A Workbook
for Body, Mind, and Spirit
BY: Angela and Karl Robb
Having a workbook to accompany the best-selling Parkinson’s book, A Soft Voice in a Noisy
World, provides an excellent wellness tool for individuals or group discussion. Questions in the
workbook are closely paired with chapters in the book. Additionally, some questions shine light
on new ideas, such as complementary therapies like Reiki, massage, acupuncture, and
Karl Robb brings the same positive attitude, hope, and strength to this workbook as to his
book, A Soft a Voice in a Noisy World. Exercises which reduce stress and reaffirm strength can be
done as individuals or in communication groups, such as The LOUD Crowd® groups at Parkinson
Voice Project. A caregiver or partner might use the questions to strike up meaningful
conversation with the affected person, whether Parkinson’s is the health concern, or some other
health conditions. Either format will help you balance the connection between mind, body, and
It’s apparent that Angela and Robb write from a wealth of experience as they direct
questions to sensitive issues, such as “What are you willing to do to help yourself?” and creating
a timeline to improve communication with a health care provider. Angela was honored in 2015
as a White House Champion of Change in Parkinson’s Disease. She and Karl also author an award winning
Angela and I have been fans, friends, and Board members of the Parkinson Voice Project for several years. We encourage anyone unfamiliar with this organization to learn about the wonderful work that they do.
ParkinsonsDisease.net Reaches 10k Likes!
If you follow this blog, you know that I have been actively posting on the new Health Union site, www.ParkinsonsDisease.net. What you may not know is that this site recently made a rapid climb to 10,000 likes! Here’s where you come in—in honor of this success, you have the opportunity to vote for one of the fine charities below to receive a donation, if they win the vote count. Encourage your family and friends to vote as well. Vote today by clicking this link and scrolling to vote in the poll!
- Parkinson Voice Project
- Davis Phinney Foundation
- Parkinson Association of the Rockies
- Parkinson’s Foundation (National Parkinson Foundation/Parkinson’s Disease Foundation)
- The Michael J. Fox Foundation for Parkinson’s Research
Parkinson Voice Project – Parkinson’s Lecture Series
The Parkinson Voice Project has launched a lecture series which features Parkinson’s experts talking about topics affecting our community. They hold this lecture each month and it’s live streamed for anyone in the world to attend. They also archive previous lectures so you can watch the lectures that are of interest to you. Visit https://www.parkinsonvoiceproject.org/ShowContent.aspx?i=1876 for more information about upcoming lectures and view previous presentations which include lectures on wellness, physical therapy, cognitive challenges, making a Parkinson’s diagnosis, and Deep Brain Stimulation.
Virginia Education Day – October 7th, 2017
If you live in or near Virginia, I hope to see at the Virginia Education Day in Williamsburg on October 7th, 2017. I am a member of the planning committee. The event is being held at Fort Magruder Hotel and Conference Center. The Education Day is has a diverse mix of wellness information including presentations by physicians, people with Parkinson’s, caregivers, and allied health professionals. Click this link to see the conference brochure and click here to register for this event.
Living Well Conference 2017 – Parkinson Foundation, Western Pennsylvania
Join Angela and me in November in Pittsburgh for their Living Well Conference 2017, where we will be presenting and facilitating two breakout sessions. Read this link for all the details. We would love to see you there! We will also be selling and signing our books and audio CD collection at both events—we hope that you can make it!
I have just returned from a working vacation in the mountains of North Carolina. The experience proved to be nothing short of amazing, as I saw an improvement in almost all my symptoms! Strength, stamina, balance, gait, sleep, cognition, and productivity were all improved and recognizably noticeable.
Nature has a healing property. Just to be surrounded by the abundance of flowering, fluttering, and stirring plants and creatures can reunite you with your connection with the planet. In this modern world, we begin to lose that connection with earth and sky, only to focus on flat screens, texts, and our on-screen accounts.
Once leaving the bucolic beauty of the lush green forest and coming back to city life, I find myself wondering if this is my healthiest decision. Returning to the sights and sounds of nature re-invigorated me–I found it to be a struggle to return to civilization, albeit, at this time, a necessity. Don’t forget to garden it, walk in it, swim in it, or just be in it–don’t lose your connection to Nature.