The Davis Phinney Foundation for Parkinson’s presented a webinar this summer on “Work, Money, Meaning, and Parkinson’s” as part of their Young Onset Parkinson’s Council webinar series.  Seven people diagnosed with YOPD participated.  Stanford Parkinson’s Community Outreach attended the webinar and are sharing our notes. 

The webinar, held on August 20, 2020, addressed questions of interest to those coping with Young Onset Parkinson’s:

• Should you keep working?
• What are your rights?
• Can you afford not to work?
• Should you tell your boss and co-workers about your diagnosis?

A recording of this webinar is posted to Davis Phinney’s YouTube channel.

For additional information about employment and PD, see the Stanford webpage on this topic.

Adrian Quintero with Stanford Parkinson’s Community Outreach attended the webinar and shared his notes today.

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 “YOPD Council: Work, Money, Meaning, and Parkinson’s” 

Hosted by the Davis Phinney Foundation for Parkinson’s 

August 20th, 2020 

Notes by Adrian Quintero, Stanford Parkinson’s Community Outreach 

This webinar features a council of several people who have personal experience with Young Onset Parkinson’s Disease:

• Gaynor Edwards is a former journalist and founder of Spotlight YOPD, who was diagnosed at age 42.
• Steve Hovey is a Davis Phinney Foundation Ambassador, and entrepreneur, diagnosed at age 50.
• Kat Hill is a Davis Phinney Foundation Ambassador and retired nurse-midwife, diagnosed at age 48.
• Heather Kennedy is a writer, speaker, and advocate diagnosed at age 40.
• Kevin Kwok is a Davis Phinney Foundation Board Member, athlete, speaker and advocate, diagnosed at age 47.
• Amy Montemarano is a Davis Phinney Foundation Ambassador, lawyer and professor diagnosed at age 48.
• Tom Palizzi is a Davis Phinney Foundation Ambassador and advocate diagnosed at age 48.  

For many people diagnosed with YOPD, there are concerns about work. Do you keep working, retire early, or take a part-time job? 

Everyone will have their own working journey and reasons for why they continue to work or not. How does a possible change in your work life affect your family? How do you contribute to supporting your family if you can’t work as you have been?  

For many people, a change in their work life can bring about a loss of identity. It might seem that other people are continuing straight on their path, while yours has taken an unexpected turn.  

Kevin explains that his neurologist says a lot of people with PD are “Type A” and find slowing down quite difficult.  

Disclosure 

The choice of sharing one’s diagnosis with managers, coworkers, or clients really varies person to person. 

For Amy, as someone in academia, she felt there was support for someone with a chronic health condition, and decided to disclose to her boss. Five years later she is still working full-time.  

With Kevin who was working in the private sector (biopharmaceutical) when he got diagnosed, his job was very high pressure and he didn’t feel he could disclose his diagnosis for fear of being “put to pasture.” He has since moved into doing patient advocacy work… 

When Tom was diagnosed 12 years ago, he was an executive at a software company of which he was a founder, and he decided to tell his business partners right away about his diagnosis. He continued to work for another 8 years before retiring. 

Gaynor was working as a journalist and running a PR and marketing business outside of London. She decided to come out about it in a company end-of-year newsletter, a few months after her diagnosis. She said she received mixed reactions from her client base, some of which chose not to bother her for fear she wasn’t feeling well, which meant a loss of income. She decided to become a consultant instead to help reduce her overall stress level and put energy into advocacy as well.  

Erin was diagnosed 2 years ago and was a vice president of a global sales division. She disclosed right away to her manager and says the reaction she received was “business as usual,” which didn’t help her figure out how to navigate this change in her health and life. The schedule of international travel began to wear on her, and she changed to only doing sales domestically. Since Covid has restricted travel in general, she has had more time to attend to her personal life.  

For Steve, at the time he was diagnosed, he owned a couple businesses and he let his staff know right away. Some people reacted with concern, but overall, he felt people were supportive. He found his ability to handle stress decreased, as well as his energy. He didn’t feel he could continue to lead the companies the way he had before and sold his business. He turned to being on different boards and volunteer work.  

Heather explains she is the “perfect example” of why employers are afraid to hire someone with chronic illness/ disability. She was late to the webinar because she was struggling to button her shirt. As a creative person with a mixed employment history to begin with, Heather was in a transition time when she was diagnosed. She began doing more contract work from home, doing writing and research.  

Questions 

How does social security and disability work? How does my employer’s long-term disability work? Will I be able to survive on it?  

There will be an upcoming webinar addressing issues around insurance.  Social security is not going to be the salary you have now, so that is important to factor in. As for employer long-term disability insurance, in Amy’s experiences, those often are good for a few years, but then you have to interact with social security disability. She also has a lot of people ask her if and when they should hire a lawyer. 

Erin changed companies and looked into insurance before the change happened.  She had to bridge the gap between jobs and insurance with marketplace insurance.  

Gaynor shares the employers want definitive answers; to be able to picture to how things are going to go. But, she says, people with PD don’t have the definitives themselves. 

Heather says it’s highly competitive out there, and people with PD can be very hard on themselves, feeling as if they have to go above and beyond. Employers will notice if we don’t feel confident in a role, and…. 

She reminds that “slow and steady” wins the race, and to not give up.  

Tom says there are a lot of variables when it comes to this question. If you are diagnosed with YOPD, you do have some time to figure this out, and get the house in order. This might include financial planners and attorneys (trust, will, etc.). The Davis Phinney Foundation has a whole network of ambassadors, who are well versed in different areas, and available to help.  

Kat had symptoms for a long time before she was diagnosed. She was the director of a busy clinic, was often not feeling well, and left on short-term disability while figuring out what was going on. She then took long term disability and social security and took time manager her symptoms, as well as looking at different options with work, before she made any bigger decisions. She had been the primary breadwinner in her house, and they had to be creative with their finances, as well as looking at retirement plans (having a Plan A and a Plan B). She says the hardest part was the blow to her ego of leaving the director position she had worked so hard for. But she says your ego can take a hit and you can redefine yourself.  

Mel from Davis Phinney notes everyone who has spoken has had choices and has been able to make things work. Wanting to speak to people who may not have the same choices or resources, who are feeling really scared (maybe with young kids, maybe not working is not an option) she asks: 

What are strategies to make work possible? What are ways to continue working and take care of yourself?  

Kevin says everyone has to be willing to pivot at that point. You may no longer be on the fast track, or be a superstar in the way you are used to. He says staying working in a stressful situation is actually more harmful to one’s health. He asks how can I turn my weaknesses into strengths? In his industry, he saw it as the patient’s voice needing more attention. He says he turned his hobby into a job and encourages others to turn their issues into advantages.  

Kat shares that in her YOPD women’s group, there are several women who are single and working as they are the only source of their income. She says some have chosen to disclose to their bosses while others have not. They have been able to flex their schedule some. For example, some take an extended lunchtime and work further into the evening, some use time during the day for exercise, which is a big help. There are resources out there for assistance in paying bills, even in the short term, which may allow for some time to “pivot” as Kevin said. For folks with young kids, she says they may need to get creative with how they are using resources for childcare (networking, trade, free resources to tap into). She says she and her partner have really changed their lifestyle- walking more, sharing a car, renting part of their house, paying less for their children’s college.  

Steve says as ambassadors he has had numerous conversations with folks around the country who are in the position that they are young, very scared, and they have jobs that they need the income, and they are unsure what to do. What he sees as the most important thing is taking care of one. Stress and fatigue play a huge part in YOPD. Finding a role, with your company or another, that can help reduce the stress. A lot of people seem to be afraid to talk to colleagues and bosses, but Steve thinks more often than not, people find compassion and help in disclosing their condition. It might include sharing needs to come in later, stay later, or take a nap during lunchtime, or other changes with what the workday looks like. It’s a tough situation to be diagnosed with YOPD, but he believes you can work with it.  

Heather agrees taking care of oneself is important and a gift to everyone around you. She recommends the book “Disability Visibility” by Alice Wong. She says as people with disabilities, or “changing landscapes,” you know your limitations very well, and are better able to communicate that with others, and have a sense of humility and honesty that others appreciate in a coworker. She suggests leading with vulnerability, people will trust you more, as we are all vulnerable, and no one knows what tomorrow will bring.  

What have been your issues with sleep and fatigue?  

Gaynor shares that for about 4 years before diagnosis, she suffered from insomnia. But, she jokes, you can “catch up on sleep at your desk!” She is hopeful that Covid might allow people more flexibility with work and schedules. She adds that people with PD can be hard on themselves with the expectations of working and doing things to the same capacity as before. She says you can’t operate at the same level and you have to be able to make allowances. One man she spoke with really felt he couldn’t share his diagnosis with many people in his life, especially not at his work. Gaynor believes his choice to not disclose is a disservice to the PD community, because there is a need for PD to not be such a hidden condition. Additionally, he might not have been getting the full support and treatment he really needed.  

Kevin shares that the non-motor symptoms are often more of the problem, and this can be for other people too. People may let him work with rigidity, but not understand why he is tired or why he is having trouble multitasking. People often don’t realize that PD affects so many systems of the body, and he feels it’s important to educate others about it.  

What about the fear of losing income? 

Amy researched everything she could- “knowledge is power.” She says with the diagnosis there was a loss of power, and a loss of confidence. Confidence in the workplace is a big part of what employers are looking for. Amy feels it took her a year or two to help get her confidence back by trying to normalize what it means to be a functioning person with a serious health condition. She decided in her workplace that she wants to show her students that it’s possible to have a hidden or non-hidden illness and still do what you want to do. She believes by being vulnerable it has helped her get her confidence back.  

Erin says for her it was important to sit down and redefine what success looks like. It is different now going forward, based on having PD. Before she often picked up the slack of other’s work, and now she has to push them to be more accountable with their work, which felt like a big risk to her. She says it has actually worked out well, and helped the organization to look at areas that needed some change. Now there are tires she might end work early because she is tired, or needing a mental break. She describes herself as type A and competitive, and that shifting her expectations of herself have been challenging, but she is finding a “new normal.”  

When do I know it’s time to retire? / When should I stop driving?  

Tom says the person with PD needs to take responsibility to know when they need to make these changes in their life. Tom says for him, he knows there are days he is “off” and can’t drive, and his wife has to drive. As for retirement, it might be a matter of when the different points line up, or when someone is no longer able to do their work duties and has to retire. He stresses that whatever problems you are having, you don’t have to go at it alone. There are the ambassadors, like himself and others on the call, which are available to help navigate the shifting landscape.  

How do you handle coworkers who may react to a diagnosis with a sense of pity/ sympathy that isn’t helpful? How do you help educate them and be seen in a way that is helpful to you? 

Tom says he decided he would tell his staff when they started to notice something was going on with him. He was diagnosed in the spring, and by June a staff member asked him why he seemed so stiff in the morning?  Someone else inquired about Tom limping some. He decided to talk with them and explain the diagnosis. From that point out, when he was traveling with staff, they would help with luggage, and drive the rental cars, and he thought, “this isn’t so bad!”  

Amy says she tells people that it is tough, and also a gift in many ways, and that she is happy to talk to them about it if they have any questions.  

Gaynor says she has found that she’s gotten sympathy at the beginning, and then the people “get bored with it.” She says some of the offer of help and such sort of fizzles out over time. 

Steve says he found many people want to talk about articles they’ve read, or share information they find about PD, and that has been frustrating for him.  

Connecting with an ambassador 

You can connect with an ambassador through the Davis Phinney website.  Towards the bottom of the page, there is a list of ambassadors which you can explore.