Update on I’m Still Here: Life with Parkinson’s

“Let me not pray to be sheltered from dangers, but to be fearless in facing them.
Let me not beg for the stilling of my pain, but for the heart to conquer it.” Rabindranath Tagore

“Everything you need to know you have learned through your journey.” Paulo Coelho

Introduction: A year ago this month, my journey started with this blog entitled “Journey with Parkinson’s”. A year ago this month, I got the dopamine tattoo on my arm.  And this month is the two year anniversary of getting my diagnosis of Parkinson’s from my Neurologist. This post re-visits Parkinson’s and reviews the 1st year  of the blog; and what I’ve learned so far from the experience.

“Live in the moment, enjoy the day, make the most of what you have.” Michael J. Fox

From the Beginning (song title by Emerson, Lake & Palmer from 1972): The disorder was first described as the “shaking palsy” in 1817 by James Parkinson, for whom it was named. Parkinson’s is a neurodegenerative disorder. Parkinson’s usually presents as a movement disorder, which is a slow progressive loss of motor coordination, gait disturbance, slowness of movement, rigidity, and tremor.  Parkinson’s can also include cognitive/psychological impairments. ~170 people/day are diagnosed with Parkinson’s in the USA; resulting in ~1 million people living here with this disorder.  Parkinson’s follows only Alzheimer’s in number of people living with a neurodegenerative disorder.

“Instead of fighting with Parkinson’s and it’s debilitating symptoms, patients, and their families are better served to find new ways to live a full life.” Amy Donaldson

And it makes me wonder (song lyrics from Stairway to Heaven by Led Zeppelin from 1971): There are 4 broad goals to this blog: i) describe living with Parkinson’s (“Life Stories“); ii) report emerging medical strategies for treating/managing/curing Parkinson’s (“Medical Knowledge“); iii support mechanism to anyone with Parkinson’s or any of the neurodegenerative disorders (“Parkinson’s Advice“); and iv) educate by presenting scientific aspects of Parkinson’s (“Translating Science”).  Listed below are the most viewed blog posts from these 4 categories from March 2015-March 2016 (statistics provided by WordPress).

Life Stories (top 4 viewed posts):
I’m Still Here: Life with Parkinson’s;
Positively Parkinson’s;
Hope Resides Within the Adversity of Parkinson’s;
Imagine Yourself Then, Imagine Yourself Now With Parkinson’s.

Medical Knowledge (top 4 viewed posts):
A Comparison of Parkinson’s to Alzheimer’s;
Isradipine: Shutting the Door on Calcium Channels to Slow the Progression of Parkinson’s?;
Potential New Parkinson’s Drug Highlight: the Leukemia Drug Nilotinib;
Anti-malaria Drugs Target Nurr1 For Possible Parkinson’s Therapeutics.

Parkinson’s Advice (top 4 viewed posts):
Meditation, Yoga, and Exercise in Parkinson’s;
Believe In Big Movements Of LSVT BIG Physical Therapy For Parkinson’s;
Parkinson mPower iPhone Application: Tracking Symptoms in Real Time;
Happiness and Parkinson’s: 10 Simple Suggestions to Make Your Life Happier.

Translating Science (top 4 viewed posts):
The Alpha-Synuclein Story In Parkinson’s;
Dopamine: A Symbol of Hope;
Purple Haze of Parkinson’s: How Dopamine Works;
Immune System and Parkinson’s (Part 1): The Brain and Immune System are Connected.

3 of Frank’s favorite blog posts not in the ranked lists above:
Air Force Core Values and A Life Lived;
Contentment, Gratitude, and Mindfulness;
How Do You Feel When You Wake Up Each Morning.

“When a friend or family member is diagnosed with Parkinson’s, there are many battles that need to be tackled. Most importantly, support, love and understanding are imperative for the sufferer, the carer and the families…. Do a lot of encouraging and try your hardest to continue on in a normal way.” Gabriella Rogers

We have no choice but to carry on (song lyrics from Carry On / Questions by Crosby, Stills, Nash & Young from 1969): Researching the science/medical advances of Parkinson’s is done in the evenings and on the weekends. Making time to write each blog post is now an ever present priority; having published 66 posts (and ~10 in draft format) in the first year.  However, I stand in awe at how prolific so many Parkinson’s bloggers are both in their zest of story-telling and in their support for so many people with (or without) Parkinson’s; I thank you all.  Getting feedback (critiques and notes) has provided me a lot of validation. Here are 3 critiques that made me smile; they definitely encouraged me to keep writing:

Leucine-rich Repeat Kinase 2 (LRRK2) Is A Possible Target For Therapy In Parkinson’s: “The picture and lead in quotes flow with continuity as per the article. Very hopeful research. As you said, a technical and informative blog.  Definitely not easily understood by the lay reader but still infused with hope, which all readers can relate to.”

A Patient’s Tale: “How very courageous of you to be writing about this online and to share your story with the students of the medical school. Even in what I am sure is one of the most trying times of your life you are still the consummate educator- telling us what it feels like to be a patient so we can be more attuned to what we need to know and do for our patients…I have been thinking about mentorship very much recently and what a profound impact it has had on me and my career.  I thank you immeasurably for being a champion for me along my journey to becoming a doctor.  The impact that you have had on the general Carolina community and the UNC SOM community is huge.  You’ve inspired us to become scientists, doctors, nurses, educators, and mentors to others.  And you continue to do this. Thank you. I hope for continued wellness, more good days than bad, and great friends and family to make good days and bad days a little better.”

Hope, Courage, Persistence, Positivity, Mindfulness, And The Journey: “I like your phrase ‘… our misfortune named Parkinson’s’. Misfortune is such a poignant, realistic and normalizing word in relationship to Parkinson’s.  Your more personal stories of life with Parkinson’s speak to those affected as well as those living without this particular ‘misfortune’ yet still your inspirational writings are inclusive and relevant to other of life’s challenges. I absolutely love this quote: ‘Do not confuse my bad days as a sign of weakness. Those are actually the days I’m fighting my hardest.’ So so true. And this original statement ‘Staying persistent is creating new options, and it continually requires the courage of one’s convictions.’ Like the connection between persistence and creating new options. Otherwise persistence is static, stoic. But this infers creativity and advancement. Your creative imagery: ‘Each day we wear a cape on our back labeled with the letters PD (Parkinson’s Disease).  Each day we bring a positive reaction to handle our symptoms, I am convinced we begin to fade those letters;’ There is such empowerment in that concept. Hope more and more men and women living with PD get to read this.”

“Never confuse a single defeat with a final defeat.” F. Scott Fitzgerald

“If you fell down yesterday, stand up today.” H.G. Wells

Don’t Give Up (song title from Peter Gabriel from 1987):  For those of us with Parkinson’s, our daily routine will be like walking at the beach leaning into a strong head-wind.  If we fall, we must get back up again and keep walking. Our disorder is somewhat belittling, full of obstacles; but it doesn’t define our existence. Our lives can still be meaningful in the backdrop of Parkinson’s; thus, if we slip on the sand, we stabilize and just keep going. Our chemical dependence requires daily dosing to maintain/achieve relatively normal body function, which means being in tune with your physical self allows you to adapt and accept your disorder. Don’t give up.

It’s okay to take two steps forward and one step backwards, because the net result is that you’re moving forward. It’s okay to be moving slower and stiffer than before; your daily exercise, your daily stretching, your daily relaxing and mindfulness are all helping relieve the symptoms. The medical advances in the arena of Parkinson’s research are incremental in their scope but hopefully show potential to limit disease progression (time will tell).  So please stay strong, stay resilient, stay positive, stay focused, stay educated, and stay hopeful. We are identified by our characteristic symptoms of our unwanted companion named Parkinson’s. We are all in this together, united by our disorder; held together by those who love and care for us. Don’t give up, please.

Thank you for your support during this first year of my journey with a blog. I look forward to learning/writing more about Parkinson’s in the second year. We are all uniquely ourselves, yet we’re all capable of being strong and resisting as well as we can the negative impact of our disorder. In closing,  live decisively in the forward direction, stay focused, be persistent and stay you. Please, don’t give up.

“Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy—the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.” Brené Brown

Cover photo credit: wallpaper-crocus-flower-buds-violet-primrose-snow-spring-flowers.jpg

8 Replies to “Update on I’m Still Here: Life with Parkinson’s”

      1. Yes, all is well. I am wondering if you would want to share the meds and supplements you are on now since writing your post “Dazed and Confused”. Do you still take reservatrol and do you take curcumin?

        Liked by 1 person

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