Continuing to work with Parkinson’s disease
A frequent issue that many people with Parkinson’s disease (PD) encounter is navigating their continued employment. This is a fraught issue for many and, like most issues affecting people with PD, is highly variable depending on each person’s unique circumstances. There are many aspects to consider:
- Should I tell my employer that I have PD? If so, when?
- Are there ways to lengthen my ability to work despite my PD?
- When is it time to stop working entirely?
- When I reach this point, what are my options for disability payments?
The good news is that many people are able to continue with their work for quite some time after diagnosis if they wish to, and with the right information and support, many people can extend their time in the workforce a fair amount. And when employment is not feasible, there are resources to help navigate the disability process. My goal is that this blog helps you feel more informed and confident so you can make the decisions that feel right for you or your loved one.
What we learned about Parkinson’s disease and employment at a recent APDA conference
I broadened my knowledge of these issues while attending the APDA Parkinson’s Midwest Congress in St. Louis on March 14, a Parkinson’s educational symposium organized by the St. Louis Chapter of APDA. One excellent session was entitled: Young Onset Parkinson’s Disease Panel of Experts Discussing Disclosure of Diagnosis, Job Accommodations, Assistive Technology, and Disability. The three experts who presented were a social worker with expertise in the PD community, Terri Hosto, an employment lawyer, Janine M. Martin, and an occupational therapist with a focus on helping people with disabilities navigate the workplace, Debbie Turley. (This symposium is just one example of the tremendously beneficial programs our APDA Chapters across the country provide. If there is an ADPA Chapter in your area, I encourage you to connect with them so you can take advantage of the educational seminars and events they offer.)
Here are some of the pearls that I learned during the session that you may find helpful. And read on for some personal scenarios based on real patient stories to learn how some people with PD navigate this part of their lives.
- The decision of whether to disclose or not is a very personal one, and there is no one right way to approach it. (I discussed the decision-making behind disclosure to an employer in a prior blog.) Most experts agree that disclosure should be done prior to PD negatively affecting job performance. Once problems are apparent, it is much harder to backtrack and explain, than to provide an explanation beforehand.
- Once a person has disclosed his or her impairments, the impairments will need to be corroborated by his/her physician. Then by law, in companies of greater than 15 employees, he/she can ask for “reasonable accommodations” in the workplace as long as he/she is able to continue to perform the job’s essential functions and the accommodations do not provide “undue hardship” to the company.
- Besides changes to work schedule or work environment, one could request a transfer within the company to an open position whose essential functions the person with PD is able to perform.
- It is not required to disclose the reason that you have impairments (i.e., that you have PD) in order to qualify for accommodations. However, providing the explanation for the impairments may be helpful for the employer to fully understand the situation.
- There are ways to get help in trying to figure out what accommodations may be beneficial. Check out the very comprehensive website of the Job Accommodations Network, which presents numerous accommodation options categorized by type of impairment/limitation and by work-related function. Example of limitations that may be experienced by someone with PD include fatigue, executive function deficits, tremor, trouble walking, etc. which could lead to challenges with commuting, accessibility of work space and other obstacles. Types of accommodations could include flexible work hours, telecommuting, scheduled naps, designated breaks, close parking space, adjustments to work space, changes in location of work space, adjustments to keyboard and mouse, etc.
- There are occupational therapists with specific expertise in Work Rehabilitation, defined as therapy interventions geared at facilitating participation in work. During the occupational therapy sessions, the therapist determines your strengths and impairments, and tries to understand what sort of work you are able to perform and what accommodations may help enhance your ability to work.
- If the decision is made that a person with PD cannot continue working, accessing disability payments may become necessary. Read here about this process.
Patient scenarios about working with Parkinson’s disease
Each person with PD deals with the issue of employment differently depending on his/her type of work, type of company, degree of disability, and many other factors. Here are a few scenarios based on real people with PD to help illustrate the variability inherent in the decision. (Names and other details have been changed for anonymity.)
Jake is a 45-year old man, who was diagnosed with PD six years ago at the age of 39. He is a successful lawyer and co-owns a law firm with a business partner. Although his partner knows that he has PD, he does not disclose his diagnosis to his clients. For the first three years of diagnosis he did not take any medication, but three years ago, he was slowing down to such a degree that medication was necessary and he is currently on Levodopa.
Although very effective, the length of time that a dose of Levodopa works for him has shortened over time and now may last only 2.5-3 hours. Sitting for long periods, which he often does during meetings, makes his OFF periods more pronounced. Besides his OFF periods, his handwriting is very poor, and his partner has taken to signing everything that needs to be signed. Currently, he has no plans at all of giving up work. He pushes himself to excel at his job and is able to perform to a very high standard thanks in part to the support of his partner. This is despite the very significant physical challenges that he faces every day.
Marjorie is a 52-year old woman who was diagnosed with PD six years ago. She works as a financial analyst for a major bank. Her first and only symptom when she was diagnosed was a right-sided rest tremor. Over time, her symptoms have remained mild, but the tremor has worsened and now occasionally involves her left side as well. She also has some stiffness and slowness of her right arm. She is on Levodopa, which helps her symptoms, although tremor remains her major problem. Because her tremor is very visible and interferes with her ability to type, she found herself needing to tell her employer fairly early on about her impairment.
With the help of an occupational therapist, Marjorie adjusted her keyboard and mouse to make her tremor less of a problem when she typed. She also obtained voice recognition software so that she had the option of dictating instead of typing when applicable. She does not know what the future holds, but for now, she feels confident that she is able to continue working successfully.
Ed is a 57-year old man who was diagnosed with PD eight years ago. About six years after diagnosis, PD symptoms were becoming more prominent and he found that the quality of his work as an IT specialist was slipping. He needed to take more Levodopa to get through the day and he began to develop Levodopa-induced dyskinesias which were bothersome.
In addition, he felt that he would be able to tackle his PD much better if he was not obligated to go to work every day. His job was very stressful and stress worsened his PD symptoms. His job also kept him from exercising as much as he wanted to. He felt that it was time to look into whether he could utilize his employee-subsidized disability benefit. The Human Resources department at his company helped him start the process. His doctor filled out the necessary paperwork, first for short-term and then for long-term disability, outlining how the symptoms of PD had negatively affected Ed’s work performance. He was deemed eligible for disability and stopped working. He now has time to exercise and is able to focus on his health.
If you would like additional help to navigate the issues of disclosure, work accommodations or disability benefits, contact an APDA Chapter or Information & Referral Center near you by calling 1-800-223-2732 or visiting our website. We also have a tremendous amount of new information on our website that can help you understand the sometimes complicated world of disability benefits.
Tips and Takeaways
- Although disclosure of work-related impairments is a personal choice, most experts agree that disclosure should take place prior to the impairments becoming apparent in the workplace.
- Consider asking for PD-specific accommodations that can help mitigate the effects of motor or non-motor symptoms on your employment.
- If accommodations are not enough to sustain employment, consider utilizing disability benefits which can help you have time to focus more fully on your health.
- APDA is here to help. From useful information on our website to local programs facilitated by our Chapters and Information & Referral Centers, we are here to help educate and support people along their PD journey.