“The greatest wisdom is in simplicity. Love, respect, tolerance, sharing, gratitude, forgiveness. It’s not complex or elaborate. The real knowledge is free. It’s encoded in your DNA. All you need is within you. Great teachers have said that from the beginning. Find your heart, and you will find your way.” Carlos Barrios, Mayan elder and Ajq’ij of the Eagle Clan
Defining Parkinson’s disease: Parkinson’s start from the loss of dopamine-producing neurons in the substantia nigra region of the brain. Lewy bodies are found in these cells; they are denatured aggregates of the protein named alpha-synuclein. Formation of Lewy bodies promote neuronal cell dysfunction and death. Parkinson’s presents mostly as a movement disorder (rigidity, slowness of movement, postural instability, and resting tremor).
Defining poetry and a poet: Jane Kenyon said “The poet’s job is to put into words those feelings we all have that are so deep, so important, and yet so difficult to name, to tell the truth in such a beautiful way, that people cannot live without it.” Likewise, Robert Frost remarked “There are three things, after all, that a poem must reach: the eye, the ear, and what we may call the heart or the mind. It is most important of all to reach the heart of the read.”
TED talks and a poet with Parkinson’s: Most people have heard of TED talks. TED (Technology, Entertainment, Design) conferences follow the slogan of “Ideas Worth Spreading”. Many universities and organizations have TEDx meetings (e.g., TEDxUNC), which are both fun and inspiring to attend. The primary reason for writing this particular blog is to connect you with Robin Morgan’s TED talk. Robin is a poet with Parkinson’s. Her poems she presented at a recent TED conference are beautiful and moving. I can definitely agree with much of her description of Parkinson’s. Clearly, it is a well-deserved honor to be chosen to present at a TED meeting.
TED talk:
Difference between prose and poetry, and prose to Parkinson’s: Maeve Maddox writes “What makes a poem ‘good’? The answer ultimately lies with the reader of the poem, but there is a certain consensus as to what makes a poem ‘good’ or ‘bad.’ According to the critic Coleridge, prose is ‘words in their best order,’ while poetry is ‘the best words in their best order.’ Poetry demands precision…The job of the poet is to create a picture in the mind and an emotion in the heart. Every single word counts.” [go here for the complete article: http://www.dailywritingtips.com/telling-a-good-poem-from-a-bad-one/ ]. Based on this description, I am clearly not a poet. However, here’s an attempt at prose to Parkinson’s.
Live on, life has not yet been cancelled
Living with Parkinson’s is like walking on the beach as high-tide approaches; sand moving under your feet while the water hits your ankles that brings some imbalance to your movement. As high tide continues in, walking becomes even more difficult. Likewise, with Parkinson’s you handle the difficulty, adapt to the changes, manage the progression, and live on.
Living with Parkinson’s says your future life will be different from your life before. Accept the diagnosis, do not let it define you, challenge it, continue to thrive and be happy, and live on.
Living with Parkinson’s says subtle progression is expected. Stay active, keep exercising, be mindful, remain persistent, be positive, show gratitude, and live on.
Living with Parkinson’s today says there is still no cure. We must remain hopeful and stay educated because advances are being reported weekly for neurodegenerative disorders. Small steps to better understanding brings us closer to new therapies, slowing progression and more, please live on.
Living with Parkinson’s says you are still you today. The same you from before the diagnosis. Stay active, be focused and, as always, remain hopeful. Live on, life has not yet been cancelled.
Day-by-day with Parkinson’s
Daily life after the diagnosis, I feel the following
Physically; a little different but getting stronger.
Inner-self; mindfulness matters.
Intellectually; focused, very focused on learning more.
Emotionally; stable but brittle, determined to expand.
Psychologically; seeking to understand.
Outreach; ready to help others understand Parkinson’s.
Consciously; ready, awake, hungry, capable.
Educationally; able, capable, ready to expand.
Mood; happy, want some red wine.
Motivation; ready, really ready to understand the brain.
Sleep; too many sleepless work-filled nights, sleepy.
Future; the big unknown, focus on the moment, breathe.
Dopamine, my constant symbol of hope
The molecular formula of dopamine is C8H11NO2. In terms of chemical structure it’s relatively simple; however, in terms of functional value it’s the missing ingredient to my disorder, to the one named Parkinson’s. My new life-pattern can be blamed on the reduced synthesis of dopamine. The result is my newfound reliance for a dopamine agonist; a complex chemical to mimic my simple dopamine.
Dopamine is more than just a neurotransmitter; it is truly my symbol of hope and renewed possibilities. C8H11NO2 solves my new life’s-riddle and confounding mysteries. This allows me to learn a lot about Parkinson’s science; which further gives me opportunity to educate others. And remember Mark Watney’s words (Matt Damon in “The Martian”): “I’m going to have to science the shit out of this.” The key, to never lose hope and to remain persistent, optimistic, and informed.
“It did not really matter what we expected from life, but rather what life expected from us. We needed to stop asking about the meaning of life, and instead to think of ourselves as those who were being questioned by life—daily and hourly. Our answer must consist, not in talk and meditation, but in right action and in right conduct. Life ultimately means taking the responsibility to find the right answer to its problems and to fulfill the tasks which it constantly sets for each individual.” Viktor Frankl
Journey with Parkinson's 