Monthly Archives: August 2017
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.