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.
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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.
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!!
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!
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.