“Look to the nervous system as the key to maximum health.” Galen
“If we could give every individual the right amount of nourishment and exercise, not too little and not too much, we would have found the safest way to health.” Hippocrates
Introduction: This blog post has five goals-
#1, Introduce Parkinson’s Awareness Month: (i) Describe the meaning of the month; (ii) World Parkinson’s Day; and (iii) Why the Red Tulip.
#2, Update everyone about the statistics (occurrence) of Parkinson’s in the USA: (i) briefly discuss the paper from Willis et al. (2022); (ii) Age and Sex Differences; (iii) The “Parkinson’s Belt” is Similar to the “Rust Belt”; and (iv) #Take6forPD Campaign.
#3, Use your voice, words, or actions to discuss Parkinson’s during Parkinson’s Awareness Month: describe the (i) 6 Pillars of Parkinson’s; (ii) 11 Tips And Character Traits For Living Better With Parkinson’s; and (iii) A Daily Mantra for Parkinson’s.
#4, Remind everyone to stay resilient in their battle against Parkinson’s: HIghlight a quote entitled “Your Life Still Matters.”
And #5, Recap my previous blog posts during Parkinson’s Awareness Month or World Parkinson’s Day (April 11, the birthday of James Parkinson).
“The energy of the mind is the essence of life.” Aristotle
April is Parkinson’s Disease Awareness Month: We dedicate the month of April to Parkinson’s awareness.
If you have Parkinson’s, you are aware of the disorder every waking minute of the day. Suppose you are a Care Partner for someone with Parkinson’s. In that case, your life frequently revolves around the many health issues presented by Parkinson’s to your person (people)-with-Parkinson’s (PwP). Now suppose someone in your family has Parkinson’s. In that case, you are acutely aware of the life difficulties presented by this ever-present disorder. There is no need to remind you about Parkinson’s awareness. However, many people are diagnosed daily; you may have friends who need information, so this month, try to increase awareness of the disorder. This month highlights education and the continuing battle one faces with Parkinson’s.
Regarding the day picked for World Parkinson’s Day- We celebrate Parkinson’s Awareness month in April since it is the birth month of James Parkinson. And we celebrate World Parkinson’s Day on April 11, to coincide with James Parkison’s birth on April 11, 1755. If you have not read his detailed first published description of this disorder, it is worth the time to do so. It is freely accessible here.
Regarding the Red Tulip– The red tulip has been associated with Parkinson’s awareness since the 1980s. A Dutch tulip grower/designer, who had Parkinson’s, developed a red and white tulip, and it was given the name “Dr. James Parkinson.”
“I have learned to live each day as it comes, and not to borrow trouble by dreading tomorrow.” Dorothea Dix
Statistics of Parkinson’s: Since I have been writing this blog, we have always stated that about 60,000 people per year will be diagnosed with Parkinson’s in the USA. New statistics now reveal that we are off by about 50%. Approximately 90,000 people per year, 65 or older, will receive a diagnosis of Parkinson’s. The study was funded by the Parkinson’s Foundation, The Michael J. Fox Foundation, and the Institute for Clinical Evaluative Sciences.
The Citation of the Article- A.W. Willis, E. Roberts, J.C. Beck, B. Fiske, W. Ross, R. Savica, S.K. Van Den Eeden, C.M. Tanner, C. Marras, R. Alcalay, M. Schwarzschild, B. Racette, H. Chen, T. Church, B. Wilson, J.M. Doria, P.G. on behalf of the Parkinson’s Foundation, Incidence of Parkinson disease in North America, npj Parkinson’s Disease 8(1) (2022) 170.
Age and Sex Differences– The study showed a significant difference between the male:female ratio in favor of males to suggest that biological sex is a risk factor for Parkinson’s. And as would be reflected in an age-dependent disorder, increasing age is the primary risk factor for Parkinson’s.
The “Parkinson’s Belt” is Similar to the “Rust Belt” in the USA- The Rust Belt is a region of the United States that experienced industrial decline starting in the 1950s. The “Rust Belt” is the name given to the part of the United States, including the Midwestern states of Illinois, Indiana, Michigan, Ohio, and Pennsylvania. States that appear to have a higher incidence of Parkinson’s in the Midwest, South, and Appalachia, including southern California, southeastern Texas, and Florida. However, it is not possible to pinpoint the reason for this occurrence; could it be due to the environment, genetics of the populations living there, or migration of people to areas of warmer states. However, a better understanding of the geographical occurrence of Parkinson’s is essential to study further.
#Take6forPD Campaign– The new statistics described above would indicate that every 6 min, someone in the USA receives a Parkinson’s diagnosis. Thus, the Parkinson’s Foundation highlights this new finding during Parkinson’s Awareness Month with the #Take6forPD campaign.
“Biology gives you a brain. Life turns it into a mind.” Jeffrey Eugenides
Telling Others About Parkinson’s: Having time to reflect on Parkinson’s and to think about telling others about the disorder is valuable. There are many misconceptions about Parkinson’s. This is your time to educate, inform, and make it more relevant in others’ minds. I have always considered this blog a pathway linking outreach, education, opinion, and experiences with Parkinson’s to anyone who discovers this site. In addition, the blog site remains a portal of supportive information/resources from many other fantastic blog sites and research organizations, hospitals, and medical centers focused on Parkinson’s science, treatment, technology, personal journeys, help, advice, and education.
Six Pillars of Parkinson’s– What aspects of our daily life are essential to living well with Parkinson’s? To answer this question, I began by thinking about what was important thematically in this blog. It came down to six themes/ideas (given alphabetically): adapting, attitude, character traits, decisions, education, and managing life with Parkinson’s. Therefore, for me, it was condensed down to six central points, or pillars, to take control of your Parkinson’s. Below the schematic drawing is a more detailed description of the pillars of Parkinson’s: Exercise, Character Traits, Nutrition, Sleep, Stress Reduction, and Attitude and Relationships (see figure below from “Six Pillars of Parkinson’s“):
Tips and Character Traits for Living Better with Parkinson’s- Over the years, I have enjoyed giving advice and trying to summarize it in a 1-page handout. I began 2016 with a blog post entitled “11 Tips And Character Traits For Living Better With Parkinson’s” (click here to read the post) that gave advice about how best to live your life to live better in the presence of Parkinson’s (see image below):
A Daily Manta for Parkinson’s– Do you need a mantra? It might help to have some words or a saying that gives you courage. A statement that tells you to keep fighting. It would help if you had something that says it is okay to rest, but never forget, the menace named Parkinson’s is not stopping or taking a break. Even though Parkinson’s moves slowly, it is still a relentless and formidable challenge. Here is my daily mantra:
A Daily Mantra for Life with Parkinson’s
“Never quit, never give up. Life can present itself as an obstacle course. It’s not the winning time that matters; what matters most is your effort to finish and not to give up. Life’s obstacle course is even more exaggerated and unfair to someone with Parkinson’s. Complete the course regardless of your time. Life and love are still thriving inside of you; just don’t give up, ever. Remain you, stay positive, and be hopeful.” Frank C. Church
Although I do not use it daily, I know where it is on my desk. So if/when I need it, the picture/quote is handy. I will read it once or twice, and by doing so, I visualize my life. I take a couple of deep breaths in and out, try to relax, and then work through the problem.
“The diseases of the mind are more and more destructive than those of the body.
[Lat., Morbi perniciores pluresque animi quam corporis.]” Marcus Tullius Cicero
Reflecting on Resilience and Parkinson’s: Last year, I wrote a blog post on resilience and its importance in Parkinson’s (Word for Wednesday: Resilience). Resilience is the ability to recover and be happy after something terrible or difficult happens. Thus, the bad or difficult situation would be Parkinson’s, and the resilience is remaining focused on a good/happy life in the presence of Parkinson’s. Elizabeth Edwards commented on resilience, “Resilience is accepting your new reality, even if it’s less good than the one you had before. You can fight it, you can do nothing but scream about what you’ve lost, or you can accept that and try to put together something that’s good.”
And in a blog post titled “Six Pillars of Parkinson’s” (click here to read blog post), I said the following about resilience (see below):
Your Life Still Matters
“Underneath the veneer of Parkinson’s, you are still you. Your true self still exists, along with whatever changes you might express in developing Parkinson’s. It is easy to get bitter about having Parkinson’s; yes, it sucks, and you may ask, why me? It takes courage to live your life from now on, but remain hopeful and positive, and show resilience; keep the real you close to the surface. You still exist.” Frank C. Church
“Great beginnings are not as important as the way one finishes.” James Dobson
Recapping the Last Eight Years of Parkinson’s Awareness Months: Since starting my blog in 2015, I have written many posts during this time frame reflecting on Parkinson’s disease and our awareness of the disorder (click here for journeywithparkinsons.com and for parkinsonsdisease.net). Why? Because this month seems essential. April is a beautiful month that connects us with the end of winter and the beginning of spring.
Taking the time to write about Parkinson’s may help other PwP understand their disorder. Hopefully, they will realize they are not alone in this journey. While we are distinctly different in how Parkinson’s is expressed, we are united and identified by this disorder. We share a common thread of trying to live a healthy life in the presence of Parkinson’s.
Given below are the titles and links to the various blog posts that I have written since 2015:
(Coming soon) 2023 Parkinson’s Awareness Month and Quotes to Support Your Journey
(Current post) Parkinson’s Awareness Month 2023: Information, Advice, and Recap of the Journey From 2015-Present
World Parkinson’s Day 2022: Hope Has Not Been Canceled
Finding Strength During Parkinson’s Awareness Month
Life with Parkinson’s in the Time of COVID-19: April is Parkinson’s Awareness Month
•2019 Parkinson’s Awareness Month- 12 Rules of Life With Exercise
•2019 Parkinson’s Awareness Month (Part 2)- Exercise
•Hope- 2019 Parkinson’s Awareness Month
•Positivity- 2019 Parkinson’s Awareness Month
•Courage- 2019 Parkinson’s Awareness Month
•Perseverance- 2019 Parkinson’s Awareness Month
•Mindfulness- 2019 Parkinson’s Awareness Month
•Life- 2019 Parkinson’s Awareness Month
•Love- 2019 Parkinson’s Awareness Month
April 11 is World Parkinson’s Disease Day
Parkinson’s Awareness Month: The Science Behind How Exercise Slows Disease Progression
2018 Parkinson’s Awareness Month and 65 Quotes to Support Your Life With Parkinson’s
Parkinson’s Awareness Month: Greetings from North Carolina, USA
Parkinson’s Awareness Month: Veterans Health Administration PD Video Series
Parkinson’s Awareness Month: Quotes About Parkinson’s Disease
Parkinson’s Awareness Month: #EndParkinsons, World Parkinson Coalition, and Community Service
Parkinson’s Awareness Month
“When you arise in the morning, think of what a precious privilege it is to be alive – to breathe, to think, to enjoy, to love.
Where a man can live, he can also live well.
Remember that very little is needed to make a happy life.
You have power over your mind – not outside events. Realize this, and you will find strength.
Your life is what your thoughts make it.” Marcus Aurelius
6 Replies to “Parkinson’s Awareness Month 2023: Information, Advice, and Recap of the Journey From 2015-Present”
Thanks Frank for your fantastic work on this project.
Thanks Mike! I appreciate your support. Frank
Hi Frank, Thank you for your posts. You so beautifully marry the scientific/academia aspects of PD with the practicality of living with it. I’d love to get together and talk with you some time. I live on Hilton Head and I believe that you are in Bluffton. Please let me know if that would be a possibility. Warmly, Karen
”Dear friends, I wish above all things that you may prosper and be in health, even as your soul prospers.” 3 John 1:2
Karen J. Holland DrPH PhD(c) MPH DABLM BCC Positively Healthy – Concierge Lifestyle Medicine Optimal Whole-Person Lifestyle Health & Wellness Individual, Family, Workplace, Community Diplomate of the American Board of Lifestyle Medicine Board Certified Coach Health & Wellness Relationships & Intimacy, Betrayal Trauma Family & Parenting Nutrition email@example.com firstname.lastname@example.org @karenjholland karenjholland.com http://karenjholland.com/ 843.384.9852
Hi Karen, thanks for your note. I appreciate your comment about my attempt to merge together the science of Parkinson’s and living with the disorder. I look forward to talking. I’ve never met someone with your expertise in so many important aspects
of life. I will send you an email to set up a time to meet. Frank
Such rich and supportive information, Frank. I am immensely grateful to have you as a guide on my Parkinson’s journey.
Bill, thanks so much for your note. Hopefully, I won’t ‘guide’ us down the wrong path for Parkinson’s. I have been researching several new areas of science-medicine that deal with Parkinson’s. Hopefully, soon, I’ll stop reading and start writing. Best wishes, Frank