Working with Parkinson's
"Can I work if I have Parkinson's disease?"
It is not only possible to work with early onset Parkinson's disease, it is probable. Most people who were working prior to diagnosis continue to work for some period of time afterwards.
"How long will I be able to work?" This is usually the more difficult question to answer. The length of time each person continues working will depend on many different factors. Some will be related to the disease itself such as symptoms, medication side effects, or progression of the disease; others are likely to be environmental factors including the overall economy and your particular employer.
Working with young onset Parkinson's disease, like any other chronic illness, has its rewards and challenges. Many people get their sense of identity, belonging, pride and accomplishment from working and doing a good job. A diagnosis of PD doesn't have to change that. In fact, when you are living and working with PD, it can be particularly rewarding to see what you are able to achieve on any given day. Despite the symptoms you are experiencing, you can still be productive and contribute to your organization, your team, your own income and your family's welfare.
Generally, when people think about the symptoms of PD, they think in terms of motor symptoms and non-motor symptoms. When it comes to the workplace, it may help to think about symptoms a bit differently. There are external symptoms those your employer, co-workers or clients may notice such as tremor, slowness, rigidity, facial mask, etc. and those that involve more internal processes such as fatigue, sleepiness, apathy or difficulty concentrating/multi-tasking. While not every person will experience all of these symptoms, developing a plan for how you may handle or explain symptoms that do occur have can be very helpful and reduce stress.
Stress is an inevitable part of most of our work and personal lives. Although it is not technically a symptom of PD, stress tends to exacerbate PD symptoms and is sometimes the most challenging aspect of working with Parkinson's. When you have a job and are, at the same time, attending to PD symptoms, treatment, financial and family concerns, finding ways of effectively managing stress becomes critically important. Investigating the benefits available to you now and in the future, whether through your employer or privately, is important and can decrease the stress on you and those you care about.
Even if you do not intend to stop working any time soon, it is advisable to make contingency plans. Sometimes a career change or move to a less stressful job with more flexible hours or one that allows you to work from home will help you remain in the workforce. In fact, it is usually more difficult for younger people to qualify for Social Security Disability Income (SSDI) , as the Social Security Administration (SSA) prefers to see "younger individuals" [PDF] (those under the age of 50) retrain or transfer their skills to another type of work.
Regarding employment, keep in mind that careful planning and deliberate decision-making are likely to lead to easier transitions and a better future.
- Employment (Excerpt from Young Parkinson's Handbook)
- Employment & Parkinson's Disease (Supplement)
- Fatigue and PD (Supplement)
- Communication: You and Your Employer (Webcast). Presented by Amy Desenberg-Wines. Midwest Parkinson Conference, Des Moines, IA, 2011.