Life with Parkinson’s in the Time of COVID-19: April is Parkinson’s Awareness Month

“The measure of who we are is what we do with what we have.” Vince Lombardi

“When you have exhausted all possibilities, remember this: you haven’t.” Thomas Edison

Précis: A different world exists today than it did just a few weeks ago, all driven by the COVID-19 pandemic. The virus seemingly favors the elderly who have a pre-existing disease(s); however, advanced age may not be an absolute requirement any longer. The virus has appeared in both developed and developing countries with equal malice. COVID-19 is a maddening menace, and it is beyond shockingly sad. However, we are here to recognize Parkinson’s awareness for April.

This post has (i) a brief description of Parkinson’s, (ii) comments about my trip to the U.S. Congress to raise awareness about Parkinson’s, and (iii) showing some quotes that I wrote to support Parkinson’s Awareness month. The quotes included below are focused on Parkinson’s, motivation, encouragement, positivity, hope, love, journey, persistence, and life.

“Sometimes the smallest step in the right direction ends up being the biggest step of your life. Tip Toe if you must, but take a step.” Naeem Callaway

Parkinson’s Disease Overview:

Parkinson’s is the 2nd most common neurodegenerative disorder in the elderly population.  Most cases of Parkinson’s occur sporadically and are usually of unknown cause (except the genetic mutations that typically lead to early-onset Parkinson’s). The complicated chapter/story of Parkinson’s includes features of neuroinflammation, immune system, oxidative stress, mitochondrial dysfunction, and excitotoxicity.

~60,000 new cases of Parkinson’s disease are diagnosed each year in the United States, adding to the one million people who currently are living with the disorder.  It has been estimated that 7-10 million people worldwide are living with Parkinson’s. Parkinson’s starts from the loss of dopamine-producing neurons in the substantia nigra region of the brain.  Formation of alpha-synuclein-rich Lewy bodies promote neuronal cell dysfunction and death. Parkinson’s presents as both a movement disorder (rigidity, slowness of movement, postural instability, and resting tremor) and non-movement disorder (depression, anxiety, cognitive, hallucinations). 

Parkinson’s patients may likely be at higher risk for COVID-19 infection when matched with the stage of their disease and the associated frailty and increased risk of infection.  We also need to realize the variability of Parkinson’s and our motor and non-motor symptoms and other critical co-morbid illnesses like diabetes, and heart/lung diseases.

“Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work; you don’t give up.” Anne Lamott

Michael J Fox Foundation-sponsored Trip to Washington, DC: I had been thinking for several months to get more involved with outreach and public service related to Parkinson’s. Then I saw the announcement on the Internet from the Michael J Fox Foundation sponsoring a trip to Washington DC. They organized a meeting with Congressional Senators and House of Representatives members to talk about funding more research in the area of Parkinson’s disease. I applied for the opportunity and was asked to participate, which was a huge honor. And I must say I was most impressed with the Michael J Fox Foundation organization and the whole trip logistics.

They paired us up with other physicians and scientists and my three guys were just fantastic. One was a neurologist working in Virginia (Virginia Commonwealth University), and the other two were researchers working in North Carolina (North Carolina State University and Duke University). We spent March 3rd getting ready for the meeting learning how to talk to congresspeople, what we had to say in a 30-second speech, and how to navigate the vast complex itself. On Wednesday March 4th they put us all on the ground and we met with six different senators and house representatives from the state of North Carolina and Virginia. It was a fantastic day. In actuality, we met with the aides for their representatives and senators but they were very knowledgeable, very skilled, and highly intelligent. It was just an incredible experience for me; I hope I represented the field of Parkinson’s well enough to have earned my trip to DC.

“I often say now I don’t have any choice whether or not I have Parkinson’s, but surrounding that non-choice is a million other choices that I can make.” Michael J. Fox

Frank Quotes on Parkinson’s:

  • “These three words, hope-persistence-positivity, have reinforced my courage; they make up a life-jacket that keeps me floating in the open waters of the ocean named Parkinson’s.” Frank C. Church
  • “Working hard to maintain control over your disorder gives you renewed strength, positivity, and hope for the future.” Frank C. Church
  • “It is no fun living with Parkinson’s. However, as long as I have breath in my lungs and blood in my veins, I will start each day with renewed persistence to take on my disorder.” Frank C. Church
  • “Strive to keep your body active, your mind engaged, fed with the proper diet, and these will provide you with the essential ingredients to gain leverage on life with Parkinson’s.” Frank C. Church
  • “Proudly walking in the halls of the Senate and the House of Representatives, I realized that the recognition of my Parkinson’s got me invited here.   However, in my mind, it was being positive, persistent, and hopeful that really got me here.” Frank C. Church
  • “When you encounter a path deemed impossible, your creativity will get you to the top. Likewise, when your disorder is now the obstacle, your resilience will carry you over the finish line.” Frank C. Church
  • “Parkinson’s is not my friend. However, having your friendship and understanding (empathy) instead of your pity (sympathy) will give me strength. And it will help me deal on a more positive-front with this unrelenting disorder.” Frank C. Church
  • “Taking life as it comes, mindful to remain in the present moment is so vital to thriving (and living) with Parkinson’s.” Frank C. Church
  • “Parkinson’s will slowly advance, never retreat. Parkinson’s will never relinquish its stronghold on you without some effort on your part. Successfully navigating life-with-Parkinson’s takes persistent determination, in other words, tenacity.”  Frank C. Church
  • “Our lives are different now than they were before Parkinson’s and using positivity will allow us to creatively handle many obstacles ahead.’ Frank C. Church
  • “As always, stay focused and determined; strive for health and strength. And through it all, try to incorporate happiness into your daily life to help manage your Parkinson’s.”  Frank C. Church 

“Maybe life isn’t about avoiding the bruises. Maybe it’s about collecting the scars to prove that we showed up for it.” Hannah Brencher

Frank Quotes on Hope, Positivity, Motivation, and Encouragement:

  • “Wake up each morning with the attitude, desire, and feeling that nothing will stop you today.” Frank C. Church
  • “Each new sunrise is your ticket stub to make someone’s day brighter, happier, and more hopeful.” Frank C. Church
  • •”Self-determination paves the way for your journey forward. Stay hungry for life, and all will feel your health and happiness.” Frank C. Church
  • “Many more people than you realize look up to you and admire what you have accomplished. Maintain your strong personal standards, and this will sustain what others think about you. It will be a win-win situation for all.” Frank C. Church
  • “Smile when you wake up each morning to add potential for it to be a great day.” Frank C. Church
  • “You are both the canvas and the brush, and the way you live your life dictates how the story of your life will be painted.” Frank C. Church
  • “To me, hope is a source of clarity. If you remain hopeful, there’s a strong likelihood that you will succeed in your endeavors.’ Frank C. Church
  • “We can reflect on today, and you can plan for tomorrow, plus you can remember yesterday. It’s much better to stay positive and go forward.” Frank C. Church
  • “When you imagine something is likely, you go for it. When your heart dreams of the unimaginable, it could be the accomplishment of a lifetime.” Frank C. Church
  • “Think back to all the things you’ve dreamed about and wanted in your life. Now start living forward and working harder to make those past dreams a reality tomorrow.” Frank C. Church
  • “Gratitude promotes the ‘4H Club’ that includes Happy, Healthy, Heartfelt, and Hopeful” Frank C. Church
  • “Life is partly a combination of past successes and failures, so what you plan, create, and accomplish today puts wind into the sails of your future ahead.” Frank C. Church

“Believe in yourself and all that you are. Know that there is something inside of you that is greater than any obstacle.” Christian D. Larson

Frank Quotes on Journey, Life, Love, and Persistence:

  • “Be convinced of the path you have chosen, use resilience to stay on course, and use your innate intelligence to complete the objectives.” Frank C. Church
  • “Promise yourself a day, like today, with some strenuous exercise (both body and brain). Just do it for the good of you.” Frank C. Church
  • “Life is about deciding which path to follow. Sometimes it is a winding trail with trees blocking the sunshine. Other times it is a superhighway with wide-open lanes. It is not the type of path that dictates your decision. What matters is where the path takes you.” Frank C. Church
  • “The journey we are taking will follow many different paths; trust your heart in making major decisions on which way to turn.”  Frank C. Church
  • “Always stay ahead of potential obstacles while not becoming an ass in achieving success.”   Frank C.  Church
  • “Loving someone without conditions and a return guaranteed is not a trivial task. However, it is initiating and completing this loop that signifies and unites us in real love.” Frank C. Church
  • ”We go from baby steps to giant leaps in life. Please remember that, for most of us, these successes happened with support, guidance, wisdom, friendship, and love from many around us.” Frank C. Church
  • “The possibility of your potential is ever-present, but achieving and even surpassing your potential demands sustained effort mixed with perseverance and a reliable support system.” Frank C. Church
  • “In football, they stop the clock for a penalty. Working hard and staying positive syncs your heart and brain, which helps you control the clock of life better.” Frank C. Church
  • “Staying persistent is creating new options, and it continually requires the courage of one’s convictions.” Frank C. Church
  • “The only thing holding you back from achieving your potential starts with you. You may have to fill in some gaps or make up some deficiencies but do it. Believe in you, succeed in you, and eliminate that limit.”  Frank C. Church

The truth is we’re all a little bit broken. We must learn to love the broken pieces of ourselves – be gentle and empathetic with ourselves, and others.” Karen Salmansohn

Parkinson’s Awareness Month.   There is a distinct sadness in Chapel Hill, in North Carolina, in the United States of America, and COVID-19 has affected the entire world. These quotes were meant to be uplifting-positive-reassuring-supportive. They were also written to provide me with an ointment to treat the painful reality of COVID-19.

2020 is my 5th year in writing about Parkinson’s awareness because it truly matters. And also, this is my 5th year of reminding everyone that you (and I) still matter today in the presence of Parkinson’s. 

“You either get bitter or you get better. It’s that simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.” – Josh Ship

Cover Photo Credit: Image by Larisa Koshkina from Pixabay

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