Parkinson’s is a Moon Walk

I am a Writer for ‘The Parkinson’s Experience‘ global community.

Something that I have become aware of, since being diagnosed with Young Onset Parkinson’s Disease, is that there is nobody in my life to teach me how to ‘do’ Parkinson’s Disease!  Throughout my life there have been my parents, family, friends, neighbours, colleagues, employers, trainers and people I know/knew to learn from and emulate.  Today, I do not actually know a person in my physical world who has any form of Parkinson’s Disease. 

My lovely Great Aunt had Parkinson’s, but she is a long time gone.  There is nobody to watch, to learn from, to ask questions of or who might lead the way.  No role model, physically present within my life for what I am now living or for what lies ahead.  This is the same for many people with Parkinson’s, all over the world.

A First Step…

It makes me wonder what Neil Armstrong felt when he stepped out of the moon lander, to take those very first steps on another world; where nobody had walked before him.  Sure, he understood what his new landscape was, for educated people had taught him the science, but it was only by making those first awe inspiring steps, himself, that taught him what it would truly be like.  He had no role model, in his life, who had gone before him to teach him about what it would feel like, how it would be or how to respond to the actual experience.

Back to the Present:

Fortunately, I have been aware of the actor, Michael J. Fox since I was a teenage fan of his adventures in the ‘Back to the Future’ films.  His adventures in those films inspired my imagination, as it did for my generation.  During my two decades of tests, scans and monitoring, it was a revelation to me when, in September 2011, I bought ‘Lucky Man’; the autobiography of Michael J. Fox.  For the first time, as I read through his own story, I felt a sense of euphoria.  Finally, I had found somebody who, though he was describing himself, was describing me.  This confirmed my own long held suspicion that I was living with Parkinson’s Disease.  Not only that, but I had a role model for this aspect of myself.  It was life changing.

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Over the following six years, my numerous tests, scans and the monitoring of my symptoms continued.  To my astonishment, I was diagnosed with Fibromyalgia in 2015 and, while I recognised the Parkinsonisms that are experienced within Fibromyalgia, there was always so much more that Fibromyalgia did not describe.  It was only in 2017 that a referral to the lead Parkinson’s Neurologist at Ipswich Hospital, here in the English county of Suffolk, would finally confirm my correct diagnosis of Young Onset Parkinson’s Disease.  

From July 2017, I started my Parkinson’s medication and I have shown considerable improvement in a number of key areas, since.  This has enabled me to continue working, studying and living life.  The illness is degenerative.  I continue to face difficulty and worsening symptoms in some aspects of my health.  Getting my diagnosis and the right medication has been a lifeline, for which I am truly grateful.

Prominence Matters:

My question remains, though; where are the role models for the Parkinson’s community?  I can name but a few famous men known to have/have had Parkinson’s and perhaps two famous women.  Of them, barely any are activists or active role models for people with Parkinson’s.  Michael J. Fox has been, and remains, an extraordinary leading light for the Parkinson’s community, for which I thank him beyond what words could truly describe.  I hope somehow my words of heartfelt thanks will reach him one day.

For now, people with Parkinson’s are trying hard to form links and connections, much of which through online self-help groups and online communities.  That is why it is my privilege to serve as one of the team that runs online global support community ‘The Parkinson’s Experience’; for whom I have written this, and many other, articles.

If you, or someone you know, is living with Parkinson’s, please help inform your community about this disease and raise awareness about the ongoing need for funding, education, medical professionals, training, support workers, therapists, volunteers, carer support services and research into a cure.

You will find links to my fund-raising effort on my web site at: www.deanparsons.co.uk

For those with Parkinson’s, and those close to them, join our global community at: www.theparkinsonsexperience.com and find us on Facebook, Twitter, Instagram and You Tube.

© Dean Parsons. 2018.

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4 thoughts on “Parkinson’s is a Moon Walk

  1. godgrantmetheserenity29145753

    Thank you for this. I am a new diagnosis at 46 and a woman. With 2 kids still at home. Newly divorced with no family left (although my friends have stepped in to fill that role quite well). Venturing into this alone. Talk about uncharted territory!! Thank you for your words and work.

    Liked by 1 person

    1. Dean Parsons

      Thank you for reading my Blog and for taking the time to comment. Welcome to the club, so to speak! I’m sorry you have been diagnosed, too. Support is vital. This is not an easy disease, if such a thing exists. Do have a look at ‘The Parkinson’s Experience’ web site and come and join our Facebook group. I think you’ll get a lot from the Facebook group. I wish you well as you go forward in life. If you log your email address into my blog, in the box alongside my article, you will be notified when I write new articles. Dean.

      Like

  2. Mari Terrance

    Around age 60 I noticed that my handwriting was getting smaller and I was writing faster. I also noticed a small tremor in my right hand. The doctor went over my different symptoms and he suspected I’d either had a small stroke or the beginnings of Parkinson ‘s disease. After finding a neurologist and some testing I was diagnosed with the beginning stages of Parkinson’s disease. That was 4 years ago. I take Sinimet four times a day to control my symptoms, which include falling, imbalance, gait problems, swallowing difficulties, and slurring of speech,December 2017 our family doctor started me on Green House Herbal Clinic Parkinson’s Disease Herbal mixture, 5 weeks into treatment I improved dramatically. At the end of the full treatment course, the disease is totally under control. No case of dementia, hallucination, weakness, muscle pain or tremors.

    Liked by 1 person

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