“One of the hardest things in life is having words in your heart that you can’t utter.” James Earl Jones
“Good actions are a guard against the blows of adversity.” Abu Bakr
Introduction: A new part of the recently completed PWR! (Parkinson Wellness Recovery) retreat for 2018 in Scottsdale, AZ was something termed “Daily Inspiration or Daily Mantra”. At the same time, Dr. Becky Farley was thinking about such a daily event, I proposed to her a similar idea that I termed “Words of Hope”. The idea was relatively straightforward: begin each morning for our 6:30AM pole-walking session with a key-word and quotes for us to reflect on, and end each day with a group-wide presentation reflecting on that word with quotes and stories. We picked the following words:
May 24- Hope
May 25- Positivity
May 26- Persistence
May 27- Adversity
May 28- Courage
May 29- Life
Below are a summary and reflection of the 6-daily mantras shown above including the pdf file based on the powerpoint file actually presented each day. Separately, the quotes used for each day will also be displayed.
“Those who dare to fail miserably can achieve greatly.” John F. Kennedy
Day 1 (May 24) – Hope presented by Frank Church and Becky Farley: We introduced the plan on opening night. Becky and I were both convinced of the potential for the daily inspiration/mantra to succeed. However, with all new things introduced into an already successful format, such as the PWR! Retreat, you go in somewhat skeptical yet with optimism too.
The following format was presented to the retreat participants as to how each session would proceed in general: (i) the presentation/meaning/definition of the daily word; (ii) further utilization of the word; (iii) examples of the word through quotes; (iv) examples of the word with stories from the group of PWR! staff, volunteers for the retreat, speakers from the session that day, and I was the common-constant speaker each day (yes, I had the honor, opportunity and tremendous pleasure of speaking 6 days in a row at the PWR! Retreat); and finally, (v) participants of the retreat were given the opportunity to read their own quotes, share a personal story and reflect on their experiences of living with Parkinson’s or alternatively, living with someone with Parkinson’s. Having heard everyone speak: Each person bravely talked when he or she took the microphone to ‘share’ something deeply personal. Each presentation was moving and just amazingly beautiful; yes, tears were frequently shed during this period of sharing. There was something special in their words, something so special (unfortunately, their stories are not included in the handouts below, sorry).
Handout: Click here to download and read the handout presented for “Hope”.
Quotes: Here are the quotes presented and read out loud by everyone the night of the first day of the PWR! Retreat based on the daily mantra word, hope:
Story: My story of hope was describing a reader of the blog, who felt better (more hopeful) following the reading of a specific blog post. Sharing this story reminded me that we all need a voice and support during our journey with Parkinson’s; it also profoundly affected me and it gave me meaning as to why I write this blog.
“I have found that if you love life, life will love you back.” Arthur Rubinstein
Day 2 (May 25) – Positivity presented by Frank Church and Emily Borchers:
Emily and I focused on the idea of staying positive in the presence of Parkinson’s.
What is the meaning of positivity? Dr. Beth Cabrera says that positivity “is the frequent experience of pleasant emotions. Some of the most common are: joy, hope, gratitude, interest, serenity, pride, amusement, love, inspiration, and awe.” We’re not saying ignore the negative feelings in our lives; bad things do happen. We are saying that research has shown there is definitely a strong link between “positivity” and health; a positive attitude improves outcomes and life satisfaction across a spectrum of conditions.
Handout: Click here to download and read the handout presented for “Positivity”.
Quotes: Here are the quotes presented and read out loud by everyone on the second day of the PWR! Retreat based on the daily mantra word, positivity:
Story: My story revolved around being positive and supportive to a nervous 1st-year medical student who had volunteered to give me the flu shot during our medical student flu vaccine day event (click here to watch a very short video).
“How old would you be if you didn’t know how old you are?” Satchel Paige
Day 3 (May 26) – Persistence presented by Frank Church and Jennifer Bazan-Wigle: Persistence is defined as (1) firm or obstinate continuance in a course of action in spite of difficulty or opposition, and (2) the continued or prolonged existence of something. If you’re going to thrive in the presence of Parkinson’s, you will definitely need persistence because you will be locked in a lifelong battle to resist its presence every minute of every day. Unfortunately, our symptoms may vary somewhat each day but Parkinson’s will never take a vacation.
Handout: Click here to download and read the handout presented for “Persistence.”
Quotes: Here are the quotes presented and read out loud by everyone on the third day of the PWR! Retreat based on the daily mantra word, persistence:
Story: We had several participants speak and I decided in the interest of time to not present my story. My persistence story relates to the difficulties of generating research funds in academic medicine; and how I was persistent in my >30-year history of being funded to study the basic science of venous thrombosis. My newest adventure has me entering the arena of grant writing in Parkinson’s research (stay tuned!).
Change your thoughts and you change your world.” Norman Vicent Peale
Day 4 (May 27) – Adversity presented by Frank Church and Claire McLean: Merriam-Webster defines adversity as a state or instance of serious or continued difficulty or misfortune; adversity certainly comes with Parkinson’s. Most people do not have Parkinson’s yet we typically all have had some kind of adversity in our lives. How we deal with adversity and how we recover from adversity can certainly help define our lives.
Handout: Click here to download and read the handout presented for “Adversity.”
Quotes: Here are the quotes presented and read out loud by everyone on the fourth day of the PWR! Retreat based on the daily mantra word, adversity:
Story: Two issues from Parkinson’s that have caused me adversity and impacted my teaching career, namely, a weaker-flatter voice and the Parkinson’s mask. Because I do a lot of teaching, I get a lot of teaching evaluations and critiques. Here are two comments from two medical students regarding my lecturing in Immunology (one of the two medical school courses I co-direct and teach in):
“Dr. Church is a wonderful lecturer! Not only is he easy to follow during lectures as far as explaining concepts is concerned, but his dedication to his students, their questions, and their general well-being never ceases to amaze me.
“Dr. Church should take it as a huge compliment that he was able to convey enthusiasm about the topic and inspire passion in students despite his expression often being limited by Parkinson’s.”
To deal with the voice and mask, I’ve taken LSVT Loud Speech Training and I do face exercises, respectively.
“A person who never made a mistake never tried anything new.” Albert Einstein
Day 5 (May 28) – Courage presented by Frank Church, Becky Farley, and Valerie Johnson:
To have Parkinson’s is to live with courage. It’s not an easy disorder; strength with courage is a prerequisite:
“Perhaps I am stronger than I think.” Thomas Merton
“Do not pray for an easy life, pray for the strength to endure a difficult one.” Bruce Lee
Strengths of Courage: Emotional strengths that involve the exercise of will to accomplish goals in the face of opposition, external and internal. Bravery [valor]: Not shrinking from threat, challenge, difficulty, or pain; acting on convictions even if unpopular. Persistence [perseverance, industriousness]: Finishing what one starts; persisting in a course of action in spite of obstacles.
Handout: Click here to download and read the handout presented for “Courage.”
Quotes: Here are the quotes presented and read out loud by everyone on the fifth day of the PWR! Retreat based on the daily mantra word, courage:
A Patient: An important aspect in many medical school courses is an interview of a patient, usually with the patient’s physician.
A Patient Presentation: Why do we present patients to our medical students? To remind them we treat people with diseases.
Student feedback: “I just wanted to say thank you for sharing your story with us today. I know that takes a lot of courage and vulnerability to do, and I appreciate you doing so to help us learn. I really admire your commitment to what you love that you have shown since learning of your diagnosis.”
Volunteering your time by doing a patient interview at a local medical school; this is really a stressful event and you may never get courageous or confident enough to try it. Doing such a task really takes courage but I encourage you if the opportunity arises please take the time to speak (your knowledge/experiences would be appreciated). Or volunteer your time for one of the PWR! Moves courses; it would give the Instructors a familiar face during their teaching. However, both scenarios are stressful and require some courage.
“Every morning I wake up and I tell myself this: It’s just one day, one twenty-four-hour period to get yourself through…I find the need to remind myself of the temporariness of a day, to reassure myself that I got through yesterday, I’ll get through today.” Gayle Forman
Day 6 (May 29) – Life presented by Frank Church: Denny O. contributed this beautiful poem: “Yesterday is but a dream / Tomorrow is but a vision / But today well lived / Makes every yesterday / A dream of happiness / And every tomorrow a / Vision of hope / Look well, therefore, to this day.”
Unrelated to our retreat and talking about a different disease Steve Gleason said: “Life is difficult. Not just for me or other ALS patients. Life is difficult for everyone. Finding ways to make life meaningful and purposeful and rewarding, doing the activities that you love and spending time with the people that you love – I think that’s the meaning of this human experience.” I like the sentiment of his statement and admire his courage through adversity. It reminds me that we are a community with a shared theme; we understand one another because Parkinson’s has been sewn into the fabric of our lives. Staying hopeful gives us the tenacity to deal with the subtle changes being forced upon us by the ever-present Parkinson’s.
Handout: Click here to download and read the handout presented for “Life”.
Quotes: Here are the quotes presented and read out loud by everyone on the sixth day of the PWR! Retreat based on the daily mantra word, life:
Story: We recited together part of my story/statement entitled “Believe in Life in the Presence of Parkinson’s”. This was written following my completion of a PWR! Workshop that was taught by Jennifer B-W in Greenville, SC.
“Life is like a camera. Focus on what’s important. Capture the good times. And if things don’t work out, just take another shot.” Ziad Abdelnour
Final Thoughts: Adding the Daily Mantra/Inspiration to the 2018 PWR! Retreat program was well-received in my opinion; the effort taken by many to come up to the podium to speak/read something was quite inspirational and very moving emotionally. Thanks to everyone who participated.
Handout: Click here to download and read the handout entitled “Summary” (please note this summary was not presented at the PWR! Retreat).
Living with Parkinson’s requires several personal strengths to bolster our daily dealing with its subtle but substantial life-changes:
- Hope- we must remain hopeful as it provides the foundation that you with your loved-ones, family, friends, colleagues and healthcare team are making a difference dealing with your Parkinson’s;
- Positivity- staying positive provides the fuel that starts each life-day with Parkinson’s;
- Persistence/perseverance- you need steadfastness in everything you do to counter the challenges of the disorder;
- Adversity- We will learn much about ourselves as we experience adversity, and we can still thrive and live better from its aftermath. Keep active mentally and emotionally, and stay physically strong as we’re able;
- Courage- your own strength provides the fulcrum where resistance resides to confront the effects of the disorder;
- Life- we may want a script to follow to simplify the daily tasks of our lives; however, the evolving complexity of life in the presence of Parkinson’s can still be fulfilling, loving and most happy.
And please remember that (i) Parkinson’s is neither a weakness nor a failure on your part and (ii) stay you each and every (future) day in your life.
“Beginning today, make the decision to love and accept yourself just the way you are. Say your name followed by the words “I love you” and make this your daily mantra, repeating it often, especially during times of stress. Let it be your first thought upon arising and the last you think before falling asleep at night. This simple act of self-courtship can profoundly change your world. Try it for yourself and see. Make a personal decision to be in love with the most beautiful, exciting, worthy person ever – you.” Wayne Dyer
Cover photo credit:https://www.wanderlust.co.uk/content/photography-tips-shooting-sand/
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