Telling people you have Parkinson’s disease is harder than it sounds. Even people who consider themselves open by nature can find themselves hesitating, calculating, and in some cases staying silent altogether, sometimes for years. A March 2026 webinar hosted by the Philadelphia & Richmond Veterans Administration addressed the emotional and practical dimensions of disclosure from diagnosis onward. These webinar notes will be of most interest to those with young onset Parkinson’s who are still employed or those newly diagnosed, two groups most likely to delay disclosure and most likely to pay a price for delaying disclosure of the diagnosis.
The two social worker speakers drew on research, published guides from Parkinson’s foundations, and personal accounts from PD conferences, to walk through the disclosure decision, audience by audience: spouses and partners, children, friends and colleagues, employers, and elderly parents.
Research on concealment finds that roughly one in four people with PD keeps the diagnosis from family entirely. Those most likely to conceal are the ones with the most at stake: the younger, the still-employed, the recently diagnosed. The emotional burden of stigma, Hall noted, can outweigh the disease itself.
Key takeaways from the webinar include:
- Concealing a PD diagnosis carries real costs: depression, anxiety, social withdrawal, and delayed care. The emotional burden of keeping a secret can outweigh the disease itself.
- There is no obligation to tell anyone immediately. Taking time to process the diagnosis privately, with support if needed, builds the confidence to have those conversations well.
- Disclosure goes better with preparation. Deciding what to share, anticipating questions, and being thoughtful about timing all help.
- Children notice more than parents expect. Telling them early and honestly, in age-appropriate terms, tends to go better than waiting.
- At work, there is no legal obligation to disclose. But telling a supervisor before symptoms affect performance opens the door to accommodations, flexible scheduling, and Family and Medical Leave Act (FMLA) protections. The Americans with Disabilities Act (ADA) offers additional protections if disclosure leads to adverse consequences.
- After disclosure, being direct about what help is and isn’t wanted takes the guesswork out of it for care partners and friends.
Note: This webinar was not recorded and no slides are available.
Related resources from the Stanford Parkinson’s website:
- Employment With Parkinson’s Disease – med.stanford.edu/parkinsons/treating-living/employment
- Families and Parkinson’s Disease – med.stanford.edu/parkinsons/resources-support/families
Now, on to my detailed notes. — Kevin
Disclosure of Diagnosis (of Parkinson’s Disease)
Speakers: Emily Hall, LCSW and Gretchen Glenn, LCSW, social workers, Philadelphia & Richmond VA
Host: Philadelphia & Richmond Veterans Administration Parkinson’s Disease Research, Education and Clinical Center (PADRECC)
Date: March 2, 2026
Summary by: Kevin Boyd, Stanford Parkinson’s Community Outreach
Concealing a PD diagnosis feels, at first, like self-protection. But the hidden costs accumulate. Research on concealment in PD finds that roughly one in four people with PD conceals the diagnosis even from family, and those who do tend to show higher rates of depression and anxiety, withdraw socially, delay seeking care, and leave the workforce earlier. They are also less likely to stay physically active or engaged in their own care. The emotional burden of stigma can outweigh the disease itself.
The people most likely to conceal PD are those with the most to lose from disclosure: younger, still employed, and earlier in their diagnosis. More than a quarter of people with PD wait at least a year to tell their employer, and those who do typically say afterward that they wished they had not waited so long.
“Most people will never feel a Parkinson’s tremor in their own hand,” Hall said, “but all of us help define what that tremor means. The more that the public understands Parkinson’s, the fewer reasons people will have to keep their diagnosis in the dark.”
New Diagnosis
A new diagnosis does not require immediate disclosure to anyone. Taking time to work through one’s own thoughts and emotions before telling others builds the confidence needed to have those conversations well. For those not yet ready to talk to family, a movement disorder specialist, mental health professional, or support group can help clarify emotions and prepare for those conversations.
About half of patients, Hall estimated, receive a PD diagnosis without a family member or friend present. One early-onset man had assumed his appointment was routine and told his wife not to come. It turned out to be a life-altering conversation, and he deeply regretted that she had not been there.
Preparing for Disclosure
Disclosure goes better with preparation. That means deciding what to share and what to hold back, choosing the right format, anticipating likely questions, and being thoughtful about timing.
Some people prefer to have the conversation in person; others by phone; others in writing. One person chose to write a letter and post it on Facebook rather than tell each family member and friend individually. For him, it solved the problem of having the same conversation hundreds of times.
If the person being told has just had a brutal week at work, or if children are going through a difficult stretch at school, waiting for a better moment is reasonable.
Having some facts about PD can also help. People carry preconceptions, and dispelling myths in advance reduces the chance of an emotionally exhausting exchange. Preparing for the questions most likely to come up, starting with “How can I help?”, gives the person with PD more control over the conversation.
Not everyone will respond well, even with the best intentions. Comments like “You look good” or “You don’t look like you have Parkinson’s” can feel dismissive, even when they come from a place of care or concern. Preparing for that in advance reduces frustration.
Telling a Spouse or Partner
If a spouse or partner does not yet know, getting them into the loop quickly matters. A spouse or partner who understands the diagnosis can help approach PD as a unit, advocate at medical appointments, and assist with subsequent disclosures to children or other family members. The instinct to protect a partner from difficult news is understandable, but the open dialogue that follows telling them is more valuable.
“Think about how you would feel if they hid a diagnosis like this from you,” Hall said.
Once a partner knows, they become a resource: someone to practice difficult conversations with, to step in if emotions run high, and to ask questions at medical appointments that the person with PD might not think to ask.
Hall added a caveat that applies throughout: this guidance assumes a supportive relationship. Not all relationships are. The more important question is knowing who the real point people are, regardless of formal family roles.
Telling Children and Grandchildren
The approach should be calibrated to the child’s age and maturity, not their chronological age alone. Younger children may need reassurance first. They might have already noticed symptoms, and simple, direct language that addresses what they have seen is more useful than abstract explanation. A very common question from young children is whether Parkinson’s is contagious, since they tend to think of illness as something you catch.
With teenagers and older children, the focus shifts to what they can do. Many want to help and respond well to being given specific, concrete ways to contribute.
An animated video in the webinar, Our Dad and Parkinson’s, featured two young girls, ages 8 and 12, talking about their father’s PD. Their candor was matter-of-fact and specific. The older girl managed her father’s medication schedule four times a day and described adjusting her pace on the walk to school so he could keep up. On strangers who stare: “If they look at my dad, like if you’re walking really slowly and people look at you, I’m like, ‘Don’t look at my dad like that.’ And then I give them the death stare.”
The younger girl offered this to anyone who might encounter a person with PD: “If you see someone by themselves and they look like they’ve got Parkinson’s, just go over and talk to them and be like, ‘Are you okay?’ Help them. It will be fine.”
Both girls spoke to the value of openness. “It helps a lot when you talk about it,” the younger girl said, “because then other people will be there for you if they know, and then it sort of makes you feel more safe.”
Telling Friends and Colleagues
Close friends are often already attuned to changes and may be easier to tell than expected. For more casual relationships, there is less urgency. If symptoms are well-managed and not visible, disclosure can wait until the person with PD is ready or until circumstances make it relevant.
For those who do choose to tell friends, having someone who already knows present in the conversation can help. How the news is delivered also shapes how it lands. Approaching the conversation calmly and with some preparation tends to set the tone for how the other person receives it.
Telling an Employer
Several factors bear on the workplace disclosure decision: the physical demands of the job, the culture and support offered by the employer, medication response, financial circumstances, and disease progression. Some people work for many years after diagnosis; others find their particular job’s demands become unmanageable more quickly. There is no legal obligation to disclose.
Michael J. Fox Foundation research found, however, that people who kept their diagnosis secret at work typically said afterward that they wished they had not waited so long. Telling a supervisor before symptoms affect job performance creates the opportunity to arrange reasonable accommodations, Family and Medical Leave Act (FMLA) use, and schedule flexibility. Hall also noted ADA protections as a recourse if disclosure leads to adverse employment consequences, and pointed to the Job Accommodation Network (askjan.org) as a practical tool for identifying specific accommodations by disease.
Two videos offered personal perspectives. In the first, Jill Ater, who owned her own business, described telling her partners immediately and framing it as a long-term planning conversation. She observed that educating an employer about PD’s typical progression can prevent assumptions about immediate incapacity, and that the stress of keeping a secret often exceeds the stress of disclosure.
In the second, Tom Palizzi, a Davis Phinney Foundation ambassador described telling his supervisor at a software company shortly after diagnosis, citing a sense of responsibility to staff and partners. His supervisor responded by working with him on accommodations. He remained with the company for eight more years. In his work pairing with others newly navigating the same question, he said, the pattern held: “The employer actually reacted by changing the environment to accommodate the person’s needs.”
Telling Elderly Parents
A less commonly discussed scenario: the person with PD who is also a primary caregiver for aging parents. Telling elderly parents may feel like adding to their burden, and the calculation becomes more complex if a parent is cognitively impaired. Focusing elderly parents on immediate needs rather than long-term prognosis can help. In some cases, weighing the cost and benefit of disclosure is appropriate.
After Disclosure
People close to someone with PD may feel they are walking on eggshells, afraid of saying the wrong thing. The result is often well-intentioned but clumsy responses. Comments like “You look good” or “You don’t look like you have Parkinson’s” can feel dismissive, even when they come from a place of care. Extending charitable interpretation, and gently correcting misimpressions where possible, works better than absorbing the frustration silently.
The “Parkinson’s mask,” the reduction in facial expressiveness that can accompany PD, adds another layer. A person who is doing well internally may appear flat or unhappy to others, generating concern or misreading. Naming this dynamic proactively can reduce confusion.
Most people will not know whether help is wanted unless told. The person with PD being direct about preferences, both what is welcome and what is not, takes the guesswork out of it for care partners and friends. Hall cited one person with PD who, when offered help opening a pack of mints, declined, replying that they were taking it as a personal challenge for the day.
Pros and Cons of Disclosing vs. Concealing
The research Hall cited points toward disclosure as the healthier path for most people. But she presented the decision as a personal one.
Concealing preserves privacy and removes the obligation to answer questions or manage others’ reactions. The costs are isolation, the mounting stress of keeping a secret, the inability to access workplace accommodations or FMLA, and the risk that others draw their own conclusions from symptoms they notice anyway.
Disclosing opens access to support, relieves the stress of concealment, and makes workplace accommodations possible. It also means fielding questions, risking changes in how others treat the person with PD, and potentially becoming more defined by the diagnosis than one would like.
Personal Stories
One woman with PD described receiving her diagnosis at age 40 with her husband present. The neurologist used the term “idiopathic Parkinson’s,” and she initially understood this to mean she did not have PD. Her husband clarified. She started crying. The doctor hugged her. Having her husband there, she said, was important.
A care partner described noticing that her husband’s prior medications were masking rather than addressing his symptoms. Her health care background helped her recognize the change. The diagnosis was painful, she said, but also a relief: it gave the medical team a target. She noted that her husband’s PD does not present typically, a point that echoed something Hall had said throughout: everyone’s Parkinson’s is different.
A third participant, a woman with PD, described telling her children, who were 8 and 10 at the time of her diagnosis, within days of receiving the news. She had assumed she needed to prepare them carefully, but found they already knew something was wrong. Telling them openly was, she said, a good thing. Both are now in college, and the empathy they developed growing up with a parent with PD stayed with them.
Disclosure looks different depending on where someone is from. In some cultures, illness is private by default; in others, family mobilizes immediately, sometimes more than the person with PD wants. Generational habits play a role too. The instinct to keep difficulties to oneself, to avoid feeling like a burden, is something many people carry long before a PD diagnosis gives them reason to examine it. The webinar, Hall and Glenn agreed, was an attempt to bring that instinct into the open and give people something to work with.