Working Full-time with Young Onset Parkinson’s

Office of workers late at night

Written by Diane Schuirman-Hagedorn

A few people around the conference room table looked teary-eyed. The person next to me touched my arm. I’d just announced at a staff meeting that I’d been diagnosed with young onset Parkinson’s disease (YOPD).

I was 42. My journey to a diagnosis took nearly six years and included lots of medical appointments and a medical leave. My office supported me the entire time.

More than two years later, my office is still great. Yet even with the best support, it’s challenging to work full-time with Parkinson’s.

Combatting Apathy

In hindsight, apathy was my first symptom. It’s harder to bring a sense of urgency to tasks, and it’s harder to prioritize them. Most of my work is deadline-driven, so that helps me stay on track. As I continue to work and manage Parkinson’s, I take extra time to prioritize things and I create visual reminders.

Accessing Resources

In my area there are lots of Parkinson’s resources, mostly designed for people who don’t work. I’m the youngest person in my local support group, and I struggle to leave the office in time to get there by 6:00 pm.

As a result of my full-time work schedule, I:

  • Take time off if I really want to participate in a Parkinson’s activity.
  • Am most likely to stream archives of Yoga for Parkinson’s and Dance for Parkinson’s online.
  • Pedal for Parkinson’s at home on a stationary bike my parents bought me.

I still get the resources and the physical benefits, but I miss out on the community aspect. That said, I do have a supportive community through my social relationships and the non-Parkinson’s groups I participate in.

Managing Energy

I feel best earlier in the day, and I have to recognize my energy is limited. I’m now less likely to bring work home, and I try to plan my tasks to match my energy. In addition:

  • I find it helpful to plan downtime on the weekend, and before and after traveling.
  • A good sleep routine, diet and staying hydrated are ongoing works in progress.
  • Sometimes I feel I have to choose between work, health and family. My decision can vary on any given day.

Ongoing Conversations and Support

My co-workers see my tremor, prescription bottles and mineral water happy hour drink (because I don’t mix alcohol with Selegilene). Some want to know if it’s ok to ask me about my health and some send me Parkinson’s-related information.

As before my diagnosis, I meet with my boss twice a month. We talk about my workload and how I’m feeling. She encourages me to take care of myself and asks for what I need.

One of my co-workers inquired about fundraising opportunities. Months later I sent her a link about a Parkinson’s walk. A week after that she said, “I hope you don’t mind. We have a team.” And so, on a rainy Saturday, my office walked for Parkinson’s. I wasn’t sure I could do the walk, but I did, slowly, and my boss walked beside me at my pace. Recently, as we completed our office planning calendar, I flippantly added that April was Parkinson’s Awareness Month. My office marked World Parkinson’s Day with blog and social media posts.

Parting Thoughts

I am fortunate and grateful to have the support that I have.

Since my diagnosis I have learned or been reminded that:

  • How you spend your time, energy and money is about priorities.
  • It’s ok to need help.
  • It’s possible to take good care of yourself and to be a good employee.

Stay Informed On Your Parkinson’s Journey

Our Every Victory Counts® manual gives people living with Parkinson’s, their care partners and their family members the tools they need to take control of their own Parkinson’s treatment through a proactive approach to self-care.

This summer, we launched a powerful new print edition of this free beloved manual.

It’s jam-packed with up-to-date information about everything Parkinson’s, plus an expanded worksheets and resources section to help you put what you’ve learned into action. Color coding and engaging graphics help guide you through the written material and point you to complementary videos, podcasts and other materials on the Every Victory Counts companion website. And, it is still free of charge thanks to the generosity of our sponsors.

Request your copy of the new Every Victory Counts manual by clicking the button below.

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Diane Schuirman-Hagedorn has young-onset Parkinson’s disease and works as a strategic communications consultant. You can email her here.

 

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