One of the most common challenges people with Parkinson’s face is balancing treatment with everyday activities and responsibilities. Exercising, going to medical appointments, attending support groups, focusing on your mental health, and all the other necessities that help you live well with Parkinson’s require a lot of time and energy. For people working when diagnosed, finding a way to balance these demands with their career responsibilities can seem impossible.
A member of our community recently submitted a question about working full time with Parkinson’s:
“I was diagnosed in May 2018. I cannot see how to manage this dilemma. I am working age with a family, but it seems I ought to spend my days exercising to keep functioning. Research proves that, and I believe it. However, I am not yet disabled, and I cannot retire or get disability to pay my bills, so I must keep working. But if I’m unable to spend my days exercising, I will certainly run down more quickly and have my life shortened. Working out then will be too late to recover the health I still have right now. This seems like a damned if I do, damned if I don’t situation!”
What we know is that he’s not alone in feeling stress about providing for a family while trying to manage Parkinson’s. Though achieving balance can seem unattainable, there are several steps you can take to extend the amount of time you’re able to work and live well in the process.
“Should I or shouldn’t I tell my employer?”
The first question to consider is whether (and if so, when) you intend to inform your employer and/or colleagues about your diagnosis. Though many people delay sharing their diagnosis for fear of retribution or alienation, others find strong support networks within their companies. Consider your relationship with your supervisor and colleagues and make the choice that feels right for you. If you do disclose your diagnosis, be prepared to explain Parkinson’s to people who may not understand it or who have misconceptions about it, remembering that this will be an ongoing conversation as you learn more about your unique path with Parkinson’s.
Review the Americans with Disabilities Act (ADA) to determine what accommodations you may be entitled to, and what steps you should take if you intend to seek job protection under the ADA. If you plan to request what the law calls “reasonable accommodations” from your employer, you must disclose your diagnosis and meet the ADA standards of disability. As you review the act, however, keep in mind that not all people with Parkinson’s will need accommodations to continue performing their jobs, and many others may need only a few.
Many people who have continued to work full-time with Parkinson’s recommend taking your time before having a conversation with your human resources office about seeking protection under ADA. Talking with others in your Parkinson’s support group can help you understand the pros and cons of this step. Meeting with a financial advisor and/or an employment attorney in your state can also help you determine the best path forward regarding the ADA.
“What adjustments can I make at work that will help me live well?”
There are many changes you can make in your work life, whether you inform your employer of your diagnosis or not. One way is to determine the times of day you’re most productive and schedule your workday around those periods. If you do your best work in the morning, for example, you could strive to complete your most important projects before noon and reserve your afternoons for less strenuous projects, exercise, and doctors’ visits. By developing a consistent routine that maximizes your productivity, you can vastly improve your workdays.
Another way to live well with Parkinson’s at work is to focus on nutrition. Pack your own lunch or purchase food at work that provides the nutrition you need to thrive throughout the day and helps you stay energized, focused, and in control.
If you’re able, see an occupational therapist soon after your diagnosis. They can teach you exercises to develop and retain fine motor skills that you may need at work, as well as offer suggestions about how to make your workspace and home accommodate your new needs and lifestyle.
Fitting in exercise throughout your workday is also possible. During breaks, you could take a walk with a coworker or visit a nearby gym. Even better, if you are able to commute to work by foot or bike—even part of the way—will get your heart rate up even before your workday begins.
Designed to keep employees active and engaged at work, many popular devices and technologies are well suited for people with Parkinson’s. Ergonomic workstations or small sets of pedals you can use under your desk allow you to move more frequently throughout the day. Voice-recognition software can save you from constant typing or by hand, which can be a huge relief if those tasks become difficult. Employers often purchase these devices for their employees even without an accompanying diagnosis, but if need be, you can make the investment yourself.
If you do choose to inform your employer of your diagnosis, you may find it easier to get some of the accommodations described above, as well as others like a reserved parking spot closer to the building or a transfer within your company to a position that doesn’t tax you as intensely. You may also be able to work remotely, a trend that has become much more common in recent years. Even if it’s only a day or two per week, this option may allow you to work more comfortably (plus, eliminating a commute frees up time to exercise). You can also ask your employer for a more flexible schedule or more flexible use of leave time, including sick days and paid time off.
While it may be difficult to consider the possibility of leaving a full-time job and the financial security it provides, some people find that transitioning to a part-time position allows them to extend their working years without exhausting themselves. Your employer may be open to changing your full-time position into one with fewer hours, giving you the opportunity to stay employed (without even changing companies) while adding more balance to your life.
You can also research your eligibility for early retirement under the ADA. You and your employer can learn more about this and other ideas for accommodations here.
“When is enough, enough?”
The strategies outlined above can help people with Parkinson’s maintain full-time jobs, but it’s important to remember that balance is achieved by a willingness to make sacrifices. Accepting your limits, realizing that you cannot do everything, and managing stress is essential to living your best life with Parkinson’s.
It’s also important to remind yourself that this is your life, and your priorities come first. You cannot put time, effort, and money into everything you want to do; so, think carefully about what is most important in your life and set priorities. Perhaps instead of driving to a young-onset Parkinson’s (YOPD) support group in the evening after work, you could join an online support group on the weekends. Maybe your daily exercise could take place with a friend or family member, giving you an opportunity to connect while also keeping up your heart rate.
Finally, remember that you are not alone. Ask for help. Building a network of supportive care partners will open doors to opportunities that you perhaps could not accomplish alone.
“How are others dealing with this new reality?”
We asked our community to share advice that helps them manage their Parkinson’s while also working full-time. Here’s what they suggest.
“I wake up very early to accomplish household tasks before my workday begins, knowing that I will be able to rest after work. I get 15-30 minutes of exercise each day and try to have a positive attitude. I was diagnosed almost 13 years ago and worked two jobs until about four years ago; I consider myself lucky to have done so.” – C.F.
“I recommend a positive attitude, having a passion in life, and engaging in exercise that you enjoy – but don’t get hung up about it if you go a few days without it. We all need to recharge our batteries sometimes!” – S.C.
“I focus on exercise, hydration, and – as much as I can – not allowing work stressors to affect me.” – J.S.
“I go to Curves every day for exercise and social interaction. I get up early to do household chores and care for my husband, and I take time to walk outdoors with my dog to clear my head and prepare for the day.” – S.T.
“I stretch every day for 20 minutes, stay hydrated, and maintain a positive attitude!” – B.C.
“I focus on staying hydrated, not sitting down too much, and only eating healthy snacks to help with my Parkinson’s and my Type I diabetes.” – B.B.
“Pray, exercise, and emphasize lifelong learning.” – D.Y.
“I make sure to stay positive, to do what I love, and not to hide what I am dealing with.” – M.F.
“Morning yoga, whole foods, meditation, deep breathing, walking, mindfulness, reiki, and sleep – or at least resting in bed if I cannot sleep!” – K.C.S.
YOPD Council Webinar Recording: Work, Money, Meaning, and Parkinson’s
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