THE FOX FOCUS...
ON LIVING WITH PARKINSON’S
Sharing Your Parkinson’s Diagnosis
at Work: A Practical Guide
Tips from Rachel Dolhun, MD, and career consultant Marti Fischer
Every person’s path from a Parkinson’s
disease (PD) diagnosis to open discussion
is unique. The decision around if, when and
how to bring professional colleagues, in
particular, into the conversation is based on
many personal factors — and you are under
no obligation to talk about your disease at
work. Those who have, though, typically
say they wish they hadn’t kept Parkinson’s
a secret for so long. Speaking to The New
York Times, Team Fox member Nancy
Mulhearn of New Jersey, a school secretary,
said: “I didn’t want anybody to feel sorry
for me. To have people look at you and start
crying — that’s not what anyone wants.”
But, she told the paper, she regretted
having waited years to talk openly about
her Parkinson’s at work.
Still, there are many reasons people do,
including very real concerns about what
PD may mean for their working
environment and career path. These fears
may be perpetuated by widespread
misconceptions about who gets
Parkinson’s and misinformation about
associated symptoms and disease
progression. Additionally, people may not
wish to explain motor symptoms to their
colleagues or mention non-motor
symptoms — depression, fatigue or
cognitive disturbances — that may
potentially affect their work.
If you are thinking about sharing your
Parkinson’s diagnosis in the workplace,
consider these step-by-step guidelines —
developed with career and professional
development consultant Marti Fischer —
to help you outline your strategy, create
talking points, deliver your news and
navigate your audience’s reactions. “When
it’s time to share your diagnosis, having a
solid plan in place will allow you to be
proactive and control the flow of
communication. Taking time to consider
the culture of your organization and the
qualities of your audience will help you find
a comfortable way to integrate Parkinson’s
into your work life,” says Fischer.
To the right are excerpts from
The Michael J. Fox Foundation’s new
resource full of practical tips for sharing
your diagnosis with coworkers.
The complete guide is available at
michaeljfox.org/workplace.
The medical information contained in this newsletter is for general information purposes only. The Michael J. Fox
Foundation has a policy of refraining from advocating, endorsing or promoting any drug therapy, course of treatment, or specific company or institution. It is crucial that care and treatment decisions related to Parkinson’s disease
and any other medical condition be made in consultation with a physician or other qualified medical professional.
Optimize Care
with Partners
in Parkinson’s
14 THE FOX FOCUS
Partners in Parkinson’s provides free, full-day events
with resources and opportunities to meet local
patients, caregivers and clinicians, in addition to
informational webinars.
To learn more and register for in-person and virtual
events, visit partnersinparkinsons.org/
attend-an-event
Make a Communication Plan that Reflects
Your Workplace
The culture of your workplace can help inform the sequence in which you tell your
colleagues and manager. Construct a list of everyone you will tell, in order of when
you will tell them. If helpful, make notes about their personal styles and how they
might react to your news. Make the invitation to meet informal if that sets an
appropriate tone. The meeting itself shouldn’t take longer than 15 minutes.
More than Words: Harness the Power of
Positive Communication
Nonverbal characteristics account for more than 60 percent of the factors that
create our perception of someone. So creating a positive impression can be
particularly challenging in Parkinson’s where facial expression may be decreased or
body language could be limited by slowness or stiffness. Some tips to maximize
non-verbal communication:
• Relax and take your time — obviously much easier said than done! To reduce
tension, breathe deeply from your diaphragm, the muscle located just below your
rib cage and above your belly button. (Many free online videos can help you learn
this simple technique.)
• Face the conversation with a confident stance. Parkinson’s can cause a stooped
posture, but just by bringing your intention to standing straight, you will look
poised.
• Adopt a positive, even tone, and don’t raise your voice at the end of a sentence.
• Maintain good eye contact with your listener.
Navigate Audience Reactions
Once you’ve delivered the news, give your audience time to process what yo u just
told them. They may be caught off guard; they may possess little or no understanding of Parkinson’s. Assess the reaction —positive, negative, neutral or, likely, some
combination — and respond as appropriate. In the case of positive or neutral
reactions, you might ask if there are questions or share something you’ve learned
since your diagnosis. When faced with a negative reaction, you may want to talk less
and simply offer to keep the door open for discussion.
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