By Gary Sharpe, Co-Founder of Out-Thinking Parkinson's.
This is my story. It is intended both as a personal insight and to help others. It is a story about the vital importance of hope, potentials, positive mindset and the will to overcome when learning to live again after a diagnosis of Parkinson's. I write these words for everyone who's lives have been affected by the disease, whether directly or indirectly.
For no-one can truly live in the dark places of hopelessness.
So let me show you that all is not lost and why Parkinson's is not the end of life as we know it.
Several years ago, I was diagnosed with Early Onset Parkinson's Disease. I was told that it was all downhill from there. Believing it was true, these predictions became the reality of my life. I died inside and I have been fading away ever since.
Until I met my Co-Founder of Out-Thinking Parkinson's, Deb Helfrich, on LinkedIn in September 2015.
We began to pool and gather our broad knowledge, to amass and integrate it holistically, and apply it to the conundrums of Parkinson's. We integrated our backgrounds and researched such diverse areas as neuro-plasticity, diet & nutrition and supplements, psychology and cognitive behavior, mindfulness, applied scientific and engineering methodology, biology, physics, philosophy, observational techniques, digital recording and mainstream, alternative & complimentary therapies.
This holistic knowledge synthesis, as applied directly to my own Parkinson's Disease, quickly lead us to the conclusion that my current drug-centric therapy was inadequate and proposed surgical interventions were not appropriate at my current stage of progression. By January 2016, we were ready to test a series of hypotheses, to keep learning everything we could from the outcomes. We decided it was important to keep a Video Diary from the outset. So on 5th January 2016, the Out-Thinking Parkinson's Project was born.
By February 12th 2016, I slept solidly for 8 hours for the first time in years. Moreover, I woke sleeping on my side - I had turned over naturally in the night.
On February 14th, I had the first day in years free from major movement problems.
And then I danced. I danced free. I danced for 30 minutes. While I was supposed to be immobile.
Then I found the music again. I listened to songs which not only enabled me to dance, but songs which helped me grieve for all those lost years. Oh, I cried that day. Cried my heart out to the tracks of my tears. Moved to those tears by lyrics from my past which had meaning then, but in which I found new meanings in the now too. Emotional power ballads with words which touched my broken heart like a knife.
That day, that day, I moved again, was moved, in ways which have nothing to do with the physical. But the music also bolstered, encouraged, uplifted. My will to survive was further magnified by words of songs from a long forgotten, buried past. Like these words from Queen's "One Vision".
"One man, one goal, One mission. One heart, one soul, Just one solution. One flash of light. One flesh, one bone. One voice, one hope. One real decision. No wrong, no right... there's no black and no white. All we need is one worldwide vision... I had a dream when I was young, A dream of sweet illusion, A glimpse of hope and unity, But a cold wind blows, And a dark rain falls. And in my heart it shows. Look what they've done to my dream... So give me your hands, Give me your hearts. I'm ready. There's only one direction... No hate, no fight, Just excitation, All through the night, It's a celebration."
Oh, how these words move me again. I cried again as I wrote this. Oh, how the refrain "Look what they've done to my dream" hurts me like an ice blade penetrating my soul. Do you understand? If you have been touched by Parkinson's, I know you do. I know you do. But in the grieving there is the healing.
Here's my message to everyone out there affected by this disease:
Don't let them tell you there is no hope. Don't let them tell you the dream is over. Let's dream again. Dream on.
Don't let them tell your life is a downwards spiral from now on. Don't let them take the rest of your life. Let's stop dying inside. Live again and live on.
If you want something to live for, a dream of achievement to focus on, something to work towards, then here is an undeniable truth. The human brain and body are capable of incredible self-healing and the power of human will pushes every boundary of what's possible every single day. With a positive mind and empowering knowledge, anything can happen.
And so, on February 15th our website outthinkingparkinsons.com was launched to tell our story with the aim to help countless others around the world. Because what we have demonstrated can not only give hope to other people affected by Parkinson's, but also has implications for Quality of Life Interventions for broader Health & Wellness issues too.
Our Mission is to improve the quality of life - not just for the millions of people diagnosed with Parkinson's - but also for their Life Partner's as well. Our Vision is to:
tackle the problem through a uniquely broad and holistic approach;
integrate and synthesize all aspects of a wide variety of quality of life Interventions;
not have a specialized focus on any particular cause or potential cure for Parkinson's, whether mainstream or alternative so as to keep an open and broad perspective on how internal (diet, supplements, and thoughts) and external (environment, devices and simple 'props', and human relationship) factors interact.
We are approaching this challenge by using applied science methodology combined with Emotional Intelligence and Self-Awareness Techniques.
We are creating a series of "Out-thinking Parkinson’s Disease" Video Diaries, intended to explain our thinking, show the testing of our hypotheses and to record any changes or effects on my condition. It is important to note that these are not meant as anything more than “show-and-tell” documentaries. We do not make any claims whatsoever: we are true Scientists, so we are not jumping to conclusions. Neither are we seeking to prove anything, we’re just going through the processes of testing a series of hypotheses. So these records are not intended in any way as medical advice. In sharing these, it is simply our hope that this may allow other Parkinson's sufferers to see the potentiality for avenues of thinking which may have elements that could benefit them too.
Indeed, if this helps just one other sufferer of Parkinson’s to improve their life or outlook, then it will all have been worth it.
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