Sharing my Parkinson’s journey has helped me find support, community

Dear readers,

I have been writing my column, “The Bright Side,” for Parkinson’s News Today for almost three years. How fast that went! I’m always amazed at how the days seem to move slowly, yet the years pass quickly.

When I first agreed to write the column, I recall feeling apprehensive about sharing our very private life with the entire world. I was also nervous, as I’d never written anything except essays in college and high school, and I wasn’t terribly successful at that.

I spoke with my family before accepting the job, worried they might be uncomfortable about me sharing our personal journey with strangers. I was delighted to learn that they loved the idea, and we discussed how our stories might be a helpful tool to those in the Parkinson’s community.

Becoming a caregiver to my husband, who was diagnosed with early-onset Parkinson’s disease at age 38, was pretty lonely and isolating. At that time, there weren’t many resources available to help me deal with the changes and challenges I was facing. I had no one to turn to who’d experienced anything similar to what I was going through. I hoped I could provide other caregivers, especially the early-onset group, with the knowledge that they weren’t alone as they navigated their own journeys.

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Writing this column has been a great way to document my time as a caregiver, as if I were writing chapters in an autobiography. And it’s been an excellent way for close friends and family to gain a better understanding of my experience and learn how to support us. I hope my story will be shared with my future family — grandchildren and their children.

I strive to inspire readers to look on the bright side, especially on the hardest days. This isn’t always easy, but I hope my column proves that it’s possible. Our attitude is the one thing that we can control, and we can choose to be positive or negative.

I think writing about my experiences is helpful to others, but I also believe it’s helpful to me. Unloading memories, experiences, and ideas about how to help readers has been therapeutic. When you know you are helping people who are dealing with similar struggles, it feels terrific.

When I read the comments from readers, it brings me so much joy! It also makes me feel less alone as a caregiver. I love knowing that my words are helping others, hopefully giving them a laugh and helping them feel supported. By the way, it’s pretty cool to see that I have readers from all over the world!

So, here is a big thank you from me to you. Thank you for reading, supporting, and commenting on my heartfelt stories about my journey as a caregiver, as well as a wife and mother of three. This diagnosis is not an easy one, and we all need a support system to get through the ups and downs. I am grateful to have this community surrounding me as I stumble through it.

XO,

Jamie

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.