On March 31 st of this year, I will observe my eleventh year of being diagnosed with Parkinson’s disease. As I say that, repeating it out loud, “eleven years,” it prompts me to realize how quickly these years have gone by. At the same time, I’m truly mindful of how incredibly fortunate and even blessed I am to live a purposeful life, with my intentions and vision on the present and future.
” Recently I participated in a documentary film called Parkinson’s Third Wind by Peter Barton. It showcases inspired Parkinson’s patients refusing to let the disease define us. The trailer for this film can be viewed at this end of my commentary. ”
Listed below are a few of the lessons I’ve learned on my journey living with PD. You need not wait to be diagnosed with an illness to “live life fully.” Consider these as “steps on a path” that may lead you on your journey into the future discovering a full, rich, and meaningful filled life with joy and happiness.
This Day. It didn’t take me long to realize that if I didn’t focus on one day at a time, I wouldn’t be able to do all that I told myself was important to me. While we are able, we get to decide how we chose to live this day; the one that is here now. What will you focus on, what will you do with this time, this gift of today? Now, the present, is much more of value to us than our yesterdays, and yes, even our tomorrows.
Be thankful. Having Parkinson’s disease has enabled me to be more mindful of things which I often take for granted. Each day we have something to be thankful for including the sunrise, the beautiful sky, the clean air we breathe, and the water we drink directly from our faucets, the bed we sleep in, the shoes we wear, the clothes that hang in our closets, as well as many others which you are aware of and are applicable for you? There is no shortage of things to be thankful for in our lives. Every day, before you get out of bed, acknowledge three things you are thankful for. In the unlikely event that you have difficulty identifying items to be thankful for, there are even free computer “apps” available that you can obtain to help guide you.
Do unto Others. I can recall my mother instilling in me when I was six years old, “there are a lot of people in the world Johnny,” She paused to make eye contact with me, “you should always remember not everyone has as much as you do.” She continued, “We have abundance while there are others who, from time to time, may need some help.” Turns out my mother knew the value of helping others. While we have specific medical challenges and needs that cannot, and must not be ignored, when we share ourselves, we gain in new friendships. Our energy which may also be boosted through these positive interactions.
Knowledge is Power. As my awareness and understanding of Parkinson’s disease increases, so, too, has my confidence and interaction with others including my doctors and healthcare professionals. I empower myself when I’m asking questions (no, there really aren’t any dumb questions) specific to me, and that’s what I need to continually remind myself. When you are going to the doctors, optimize your time by taking paper and pen with you and decide in advance who is best to take necessary notes. If you are the person who has PD and your handwriting is equivalent to chicken scratch, you’re probably not the best person to take notes.
Exercise Body and Brain. My oldest son, Lars, reminds me frequently, “If you don’t use it, you lose it.” Of course he’s right to remind me, especially because he doesn’t want to see his father unable to get up from a chair (although that large stuffy chair at his house is increasingly becoming more difficult to lift myself out of!). Read this sentence twice: Research is continually reinforcing the value of sustained exercise for people who have Parkinson’s disease! Although I’ve made some accommodations to advancing aging, the value of physical exercise and mental stimulation, including, reading, writing, singing (preferably in the shower according to my wife), puzzles, sukudo, and numerous other activities are a must. If you haven’t seen the inside of a gym in a very long time, yes, you’ll need to make an appointment with your family physician before beginning. Start with something slow and easy and work up to more strenuous activities. Research does reflect the value of specific ways and methodologies of exercise, but, in my opinion, it’s not which exercise, but, which exercise activity you stay committed to. In other words, don’t workout with free weights if it’s not you’re thing.Pick up a book on something you’ve been wanting to learn in order to exercise your brain. Learn to play an instrument or a new language.
Humor in your life. It’s a must!! DON’T STOP LAUGHING. Oscar Wilde, a remarkable writer who lived more than 100 years ago once said, “Life is too important to be taken seriously.” It’s one of my favorite expressions because it reminds me on occasion when I’m taking myself too seriously, to not forget the tenuous nature and brevity of life. Humor, used appropriately, can provide us with moments of great frivolity, a respite from the crazy world in which we live, reduce stress levels and high blood pressure, and those much needed endorphins.
Research. Parkinson’s disease, first mentioned in a scholarly essay written by Dr. James Parkinson’s about his research in 1817 An Essay on the Shaking Palsy. He was the first to describe “paralysis agitans,” a condition that would later be renamed Parkinson’s disease by Jean-Martin Charcot. Now, more than 200 years later, and at present day, there is no cure for PD. What is needed is research, and participants who are able to participate in research. Through research we are inspired and have HOPE for the future when there will be no Parkinson’s disease. Please, if you are able, participate in research when and where you can.
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John and his wife Christina sent me a painting of a remarkable bird he painted.
I thanked him this morning and wrote him a poem:
WHO KNEW HE'D BECOME A ROCK STAR?
That's our man, JPK, accompanied
by his bride Christina,
launching his artistry
all over America, a country
swathed in cobwebs unthinkable.
....
Am drinking non caffeinated Peppermint Tea from my Harry and Meghan cup.
....
I recommend to everyone I know Helen Mirren starring in THE QUEEN on Netflix.
Mirren is an outstanding actress, as is the fellow who plays Tony Blair, who finally got through to her to fly the flag at half mast at Buckingham Palace and acknowledge Princess Di's death though she detested her.
Blair used every bit of reasoning and logic he could think of.
Mirren is an outstanding actress, as is the fellow who plays Tony Blair, who finally got through to her to fly the flag at half mast at Buckingham Palace and acknowledge Princess Di's death though she detested her.
Blair used every bit of reasoning and logic he could think of.
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