The Song of the Journey Ahead is About Living Authentically in the Presence of Parkinson’s

“Choosing one path means abandoning others – if you try to follow every possible path you will end up following none.” Paulo Coelho

“An awareness of one’s mortality can lead you to wake up and live an authentic, meaningful life.” Bernie Siegel

A beginning: ~7 people/hour are diagnosed with Parkinson’s in the USA; resulting in ~1 million people living here with this disorder.  Parkinson’s ranks #2 in the neurodegenerative disorders, only behind Alzheimer’s.  I joined the group of those living with Parkinson’s 18 months ago; my Neurologist commented that it had likely started ~3 years earlier (due to my description of evolving symptoms).

“People with Parkinson’s are not some weird people on the edge of human experience.” Helen Mirren

“Parkinson’s is a slow but inevitable process. It’s hard living with it on a daily basis. The difficulty facing people with it is that they never quite know ‘Can I or can’t I do this today?'” Helen Mirren

The journey continues: J.R.R. Tolkien said “Little by little, one travels far”; indeed over the past 18-24 months I’ve had an incredible journey.  The “Journey with Parkinson’s” blog started 5 months ago (March 9, 2015), and this is the 50th post. There are 4 broad goals to this blog: to describe living with Parkinson’s; educate by presenting scientific aspects of Parkinson’s; describe emerging medical strategies for treating/managing/curing Parkinson’s; and as a support mechanism to anyone with Parkinson’s or any of the neurodegenerative disorders.  Getting feedback (critiques and notes) has provided me a lot of validation and valuable information (thank you!).

‘Though the road’s been rocky it sure feels good to me.” Bob Marley

It is good to have an end to journey toward, but it is the journey that matters in the end.” Ursula K. Le Guin

“The journey is the treasure.”  Lloyd Alexander

Living with Parkinson’s:
Living with a slowly changing disorder like Parkinson’s is frustrating.  You can remember the days of smooth-seamless body movements; however, your body has none of those memories.
Living as you are re-learning how to walk again, to hit a golf ball again, and to sign your name again; every hour of every day.
Living with Parkinson’s says you must accept and deal with these annoying symptoms; you don’t have to be defined by it.
Living with Parkinson’s now means you need courage, commitment, hope, and a strong will to fight and try to slow progression; remember, your life’s still happening.
Living with Parkinson’s argues that you acknowledge its presence; by remaining persistent you can still accomplish the majority of your current/future goals.
Living with Parkinson’s is an awkward balance between functional and dysfunctional movements; the good news is for most of us our cognitive function remains intact.
Living with Parkinson’s usually means taking medicine/supplements at carefully spaced-intervals; it may be a nuisance but life is better on this timed-schedule.
Living with Parkinson’s implies that this slowly and subtly changing disorder will alter your life; stay positive and focus on enjoying the current moments, mindful that your life can remain full, meaningful, fulfilling.
Living with Parkinson’s will come with adversity but you can choose to live decisively.
Living with Parkinson’s offers us a mandate to remain authentic and live-out our lives genuinely; you still are significant.

“Authenticity is a collection of choices that we have to make every day. It’s about the choice to show up and be real. The choice to be honest. The choice to let our true selves be seen.” Brené Brown

“The authentic self is the soul made visible.” Sarah Ban Breathnach

“It is my intention to live an authentic life of compassion and integrity and action.” Zachary Quint

The song of the journey ahead is about living authentically in the presence of Parkinson’s:
I never invited Parkinson’s to enter my life; I now acknowledge its existence in me.
I never expected to host a Parkinson’s blog; it’s now part of my life’s written word.
There’s time left in my life to sing.
There’s time left in my life to live authentically.
There’s time left in my life to love decisively.
There’s time left in my life to focus on medical education/research.
There’s time left in my life to live forward and deal with this disorder.
There’s time left in your life to sing, live, love, work, manage your disorder.
There’s time left in your life to accomplish much, if not all.
Remain hopeful, mindful, positive, courageous, and persistent.
Let our journey continue.

“The truth is: Belonging starts with self-acceptance. Your level of belonging, in fact, can never be greater than your level of self-acceptance, because believing that you’re enough is what gives you the courage to be authentic, vulnerable and imperfect.” Brené Brown

“The greatest thing in this world is not so much where we stand as in what direction we are moving.”  Johann Wolfgang von Goethe

3 thoughts on “The Song of the Journey Ahead is About Living Authentically in the Presence of Parkinson’s”

  1. Loved this last post. You are truly living your life to the fullest as well as sharing it all with others…remarkable…keep up the good work. Still think this would be a wonderful source book for all…patients as well as families.

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  2. Dear Frank, I am deeply touched by today’s post. You are a strong person, focusing on the important things in life – living , loving, and love what you’re doing and what is important in life. Keep up your wonderful spirit!

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    1. Åsalie, thank you for your nice words, they are most appreciated. I have so many great memories of you and Maris in Sweden (here are 3): playing music with Maris and drinking a bottle of Lakka Cloudberry liqueur on the Summer Solstice; eating your freshly baked Rhubarb pie after trying to wind surf; finding what felt like the only open restaurant late one night in southern Sweden, but it was really good Chinese food. Hope all is well? Frank

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