A Day of Parkinson’s Education in Williamsburg

Last Saturday, my wife, Angela and I had the great privilege to address over 300 people with Parkinson’s and their carepartners/caregivers in beautiful and historic Williamsburg, VA at the American Parkinson Disease Association (APDA) Virginia Education Day.  This event was hosted by the APDA Hampton Roads Chapter and the APDA Richmond Metro Chapter.

Angela and I participated in a couples talk with Charlie and Cammy Bryan, who are well known for their state-wide work, writing and advocacy. We really enjoyed working with them! The moderator, Don Bradway, knows both couples and did a masterful job of getting us to talk about our lives, perspectives on Parkinson’s disease, and our philosophy on living well with Parkinson’s. We got to meet so many amazing people who are living well with Parkinson’s!

Neurologists from around Virginia did an informative panel on understanding, managing, and living with Parkinson’s disease. My friend and fellow advocate, Bob Pearson did a talk with a neurologist on the importance of clinical trials and his experiences in participating in these studies. A clinical dietitian, Ms. Ka Wong from Hunter Holmes McGuire Veteran’s Affairs Medical Center in Richmond did a very informative talk on inflammation and diet.

The final breakout, held concurrently with the caregiving session, was a panel introduction to the benefits of a variety of therapies including PWR!, Rock Steady Boxing, Yoga, LSVT/BIG and SPEAKOUT!, and Tai Chi! My wife attended the caregiver session which was a panel discussion with three family caregivers. This panel shared their experiences on a variety of caregiver issues, provided informational tips and offered resources.

What was unique about this conference was the variety of people sharing their knowledge with our Parkinson’s community – those living with Parkinson’s, the medical community, allied health professionals and more. This event happens every other year and brings Virginia’s Parkinson’s community together to review the developments in Parkinson’s disease, to inform, to inspire, and to educate.

The Power of an Amazing Quote

Powerful words stay with us and in a world of sound bites, there is no doubt that a good quote leaves a lasting impact. Here is my video on The Power of an Amazing Quote. Words inspire, motivate, and invigorate. Good quotes are memorable and timeless.
I hope that you enjoy this reading! Feel free to share it – if you find this to be helpful!
Thank you!
– Karl

Health Union’s Living With podcast features Karl and Angela Robb

Angela and I have been contributing articles to ParkinsonsDisease.net for almost two years. Health Union (HU)’s mission is to inspire people to live better with challenging health conditions. The HU Living With podcast this week is from an interview we did last year at their headquarters.

You can find the podcast on:

iTunes: https://itunes.apple.com/us/podcast/living-with/id1438647961
Google Play: https://play.google.com/music/listen?u=0#/ps/Iaandgaawrsjynbewo2pcy6gnt4
Spotify: search for Living With

Health Union’s Living With podcast

In this podcast, we discuss relationships, living well with Parkinson’s disease, and a few tidbits that we have learned. Angela and Karl Robb have been married over 20 years and Karl has had Parkinson’s disease for over 30 years. Hear their outlook on illness and keeping positive.

Messages to Ponder for 2019

Inspiration can come in many forms, be it words, photos, audio, or video. In the coming year, this site will incorporate a wider use of these tools to add to the informational and entertainment aspects of this site. I truly hope that if you or someone you know is seeking information, support, inspiration, or a fresh perspective on Parkinson’s disease  and other chronic conditions, that you might consider sharing this website with those looking for articles on living with illness. The archives on this site contains nearly 400 articles to read on Parkinson’s and living with illness. If you are seeking more content, check out my recent articles on ParkinsonsDisease.net.

The following is a condensed video of many of my messages from my 12 Days of Christmas. I hope that you enjoy it and feel free to share it with anyone that you think might find benefit:

 

An Inspirational Magic Man

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.

My selfie with magician Ricky D Boone at Magic Central, Asheville NC

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!!

A Twenty Year Old Speech Rings True

I was going through my files of paperwork and came across years of documents that I considered to be motivational, inspirational, and truly worth being read and reread. You might even remember it.

Although this following post is not specifically Parkinson’s disease related, I find it to be sound and practical advice for everyone. I hope that you enjoy it, find at least 1 of the 10 pieces of advice to be a morsel to take away, and may even share once again with others:

Palo Alto High School Speech by Guy Kawasaki 6/11/95

10. Live off of your parents as long as possible.
9. Pursue joy—not happiness.
8. Challenge the known and embrace the unknown.
7. Learn to speak a foreign language, play a musical instrument, and play no contact sports.
6. Continue to learn.
5. Learn to like yourself or change yourself until you can like yourself.
4. Don’t get married too young.
3. Play to win and win to play.
2. Obey the absolutes.
1. Enjoy your family and friends before they are gone.

If I were to add to this thoughtful list, I might add – Tell the people in your life and those you care about, just how much they mean to you, while you still can!

 

Advice worth consideration

10 Tips for Staying Positive and Proactive

Watching dogs play in the snow made me laugh!

Here are 10 Tips for Staying Positive and Proactive

• Take care of yourself. The more you know about Parkinson’s, the better. You play the key role in your own health. Seek out therapies/modalities that work for you. Accepting your illness does not mean giving up.
• Appreciate the good in every day. Focus on what you can do, not what you can’t do. Savor and appreciate everything.
• Stay flexible in all ways. A rigid pole often tends to break in the wind. A flexible pole will bend and give in the wind. Being more flexible will add a new dimension to your life.
• A person with a good attitude is much easier to be around and is good for our well-being.
• Being positive is a choice! When we label everything “good” or “bad”, we lose sight that we cannot savor one without the other. You cannot have the sweet without the bitter. This is life!
• Explore the stressors in your daily life. Find an outlet to help you release your stress.
• Procrastination, denial, fear, and apathy only delay the opportunity to begin our own self care. Don’t hesitate to ask for help when you need it.
• If you don’t laugh every day, start! Laughter has all kinds of health benefits. Don’t take yourself too seriously. Don’t stop laughing!
• Plan ahead for what you can and be aware and engaged. Always have a plan B, C, or more.
• The best exercise or activity is the one that you like and you are willing to do. If Parkinson’s prohibits us from doing something we love, then we must find a replacement for that activity.

Click this link for the 10 Tips PDF to share.

Exclusive Interview With Davis Phinney

Davis Phinney knows how to inspire an audience! I have had the privilege of seeing and hearing him speak on his dealing with early onset Parkinson’s disease several times. Davis is an Olympic Bronze Medal winner in cycling. He has achieved more wins – 328 victories in all – than any other US Cyclist.

The insight of Davis’ perspective is truly inspiring and a great way to begin Parkinson’s Disease Awareness Month. I hope that you enjoy this interview and will share it with others facing Parkinson’s.

I want to thank Davis and everyone at The Davis Phinney Foundation for allowing me this opportunity. What a great way to begin Parkinson’s Disease Awareness Month. I encourage you to learn more about Davis’ Foundation and the upcoming Victory Summit in Richmond, Virginia on May 19th, 2012.

1. How has PD changed the way you view life?

PD has had a significant effect on me – on my view of life and my place in it. I am much less likely to take things for granted than I used to be, and I’m much more ‘present’ for, and appreciative of, positive aspects to any given day.

2. What has PD taught you that you didn’t know before your symptoms?

It has taught me much about living with disability and disease that I wouldn’t have otherwise learned – and that has led to greater awareness, understanding and empathy – which I view as very positive and grounding.

3. What is your advice to newly diagnosed PD patients?

My advice would be to immediately check out the Every Victory Counts (EVC) manual! being newly diagnosed with this disease, one faces an uncertain frontier, and there may not be a full spectrum of resources or the right resources immediately at hand. We work hard to keep the information in the EVC manual relevant and highly applicable – and based on highly positive feedback from the Parkinson’s tribe – we’re filling a void.  So EVC is a good starting point as well as accessing the local Parkinson’s community for resources, support and connections available in the immediate community.

4. What do you do on a daily basis to fight your Parkinson’s disease?

I start each day with a smile in the mirror an affirmation stating my intention that this is going to be a good day.  I make it a priority to eat well (but not obsessively), take pictures, engage people in conversation and relish in the little victories; a good cup of coffee, a laugh out loud moment, an inspired sunset, etc.

In an active way I engage myself physically whether it’s through yoga, hiking, walking or cycling around town.  Getting outside and breathing and moving is a big key for me, but I feel some form of daily exercise, while good for anyone, is crucial for those of us living with Parkinson’s.

5. How do you think sports and teamwork helped prepare you for dealing with Parkinson’s?

Great question. The way I relate my athletic background in dealing with Parkinson’s is to give myself goals that are not unlike what I did when I was competing, but instead of focusing on winning bike races my focus is on enhancing my daily quality of life.  That’s the goal; to make today better – and in so doing, I setup tomorrow for success and the day after and so on. With PD, it helps tremendously to be self-sensitive, to have self-awareness, to ask the question: ‘how’s this medicine affecting me?’ for example. Athletes are usually instilled with this awareness, so that’s a plus.

As regards teamwork, we are not living with this disease singularly. There are (hopefully) caregivers around us (spouse, family, therapists, doctors), whom you are reliant on. By doing what you can to help yourself, you set a good example for the team and are in a better position to ‘marshal your forces’! Creating a good team is vital to managing this disease.