The Journey of Colleagues and Comrades

Lori DePorter avatar

by Lori DePorter |

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Parkinson’s is not considered a rare disease, as it affects nearly a million in the U.S., but the people within the Parkinson’s community are rare to me. They are unique, and they are exceptional. I am proud to be an advocate for Parkinson’s awareness and the rare disease communities that BioNews serves.

Since joining BioNews, the parent company of this website, as a columnist in July 2019, I have grown both professionally and personally as a direct result of my colleagues. From managing editors and science writers to fellow columnists, many are part of rare disease communities. Their knowledge as advocates for others is exemplified through their work, but their courage and passion come to life through their writing as they tell their stories.

Recently, I saw this tweet by Dr. Michael Okun: “‘For me, the diagnosis was the cure.’ How many of you have heard this from someone with a neurological or other disease? The journey starts with the diagnosis. There is not an expert on earth who can, in my view, ‘crystal ball’ a timeline of an individual’s sojourn on earth.”

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Initially, I wasn’t sure how a diagnosis could be thought of as a cure. In fact, I didn’t get it at all until I remembered the medical limbo — that period of time you endure when you have no diagnosis. Perhaps in the case of many diseases, the diagnosis cures the uncertainty of the limbo and allows the journey of living one’s best life to begin.

Different journeys with the same beginning

While we each navigate our own unique journey to its end, we all share the same beginning: our diagnosis. For some of us, it began as a baby or a young child, for others as teens, and for some as adults. Despite the differences, at that moment our journeys began and our lives were given a detour that we never expected. And although we didn’t know it at the time, we were set on a course to meet.

“We are not a team because we work together,” Vala Afshar of Salesforce said in a tweet. “We are a team because we respect, trust, and care for each other.”

As part of the team at BioNews, we became colleagues. However, we also became comrades — fighting our own battles, but backing up one another along the way. We are a team that empowers ourselves by empowering one another and the communities we serve.

For Rare Disease Day on Feb. 28, I encourage you to explore the work of my comrades on some of the 50+ disease communities BioNews hosts. Pick one or two, learn something new, and participate in a forum discussion. Whether you choose cystic fibrosis, Friedreich’s ataxia, spinal muscle atrophy, or another rare disease that you never knew existed, I am certain you will learn some important facts and figures.

And yes, the knowledge is important, but the stories of their life experiences provide the true lesson — one of courage and perseverance, as they do their best to live their best lives.


Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Comments

Timothy Lumsden avatar

Timothy Lumsden

Having had non essential tremors since my early teens, I realized that made me unique in a not so positive way. No one that I knew at my age had the tremors. Of course it had to be my dominant hand which I do everything with. In my 50's my ability to smell was disappearing and I had no clue that was an early sign of Parkinson's. Early in my 60's my right arm and hand began to vibrate at rest and my wife noticed I was slowing down.. Once again I felt unique in a not so good way. It wasn't until I was diagnosed in 2018 with Parkinson's that I learned I was not unique and that there are many of us with varying degrees of symptoms. Having joined Rock Steady Boxing and reading about PD, I now realize I am not unique. My journey might not follow the same trail as the next person but we are all one community joined in a common diagnosis that can manifest itself in myriad of ways.

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Lori DePorter avatar

Lori DePorter

Thank you for sharing. I agree - while our symptoms are uniquely our own - as a community we are a force of nature. The camaraderie within a Parkinson's community is a lifeline for many of us

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