The Michael J. Fox Foundation once again came out with a great document…this time about coming out at work with your PD diagnosis. To download, click here:
Part of the document refers to a 2012 New York Times article about the pros and cons of telling your work colleagues about your diagnosis. Click here for that.
As for my story, here’s what happened at the public charter school I work at in the Bronx:
I told my three supervisors (school principal, executive director, and head of staff training) about my condition early on – even before the diagnosis was finalized. I wanted them to know why I was taking so many sick days over the course of a year for doctor appointments. At one point my neurologist at the time said I either had ALS (Lou Gehrig’s disease) or multiple sclerosis. If it turned out I had ALS, that would have had serious implications for my future and my ability to continue working.
When my Parkinson’s diagnosis was finalized (after I visited a half-dozen specialists for second opinions), again I let my three supervisors know. But since I didn’t display any major symptoms, I didn’t tell anyone else at work.
Over the next few months, I began to limp mildly, and at times my right arm would tremble. Occasionally someone on the staff said something like, “I hope you’re doing physical therapy for your leg.” And children asked me about my shaking arm when I sat with them at their desks to look at their writing.
About six months after my official diagnosis, I sent out a mass email to the entire staff, saying I had Parkinson’s. I’ll paste my “coming out” email below, as well as my principal’s response.
In general, the response from the staff was overwhelmingly supportive.
I also went on the school’s televised morning broadcast (a live program that all the kids watch on their classroom SmartBoards) and talked about my having PD. A handful of students were on the show with me, and they asked me all sorts of questions about what it meant to have PD.
In the years since, I’ve been invited into my school’s classrooms to talk about Parkinson’s, and the school’s Facebook page encouraged viewers to visit my Parking Suns blog.
And today? I still have my job. The school’s leadership still counts on me to contribute to new projects. During the summer vacation I still develop and teach week-long workshops to train new and old staff. And I still get invitations to travel internationally (Korea, France, and now Sweden) to deliver workshops on our school’s unique pedagogy.
I’m very fortunate.
Here’s the email I sent to the entire staff
Subject: Personal Update
Date: Fri 1/11/2013 6:57 AM
To: EntireStaff
Good Morning!
For some time now, students and staff members have noticed that I walk with a limp. Many students also ask why my hand trembles when I’m working with them on their writing. The fact is I have Parkinson’s disease. Parkinson’s disease is a neurological disorder, whereby a small part of my brain no longer produces enough dopamine, a chemical the brain needs to control the body’s muscles. About 1% of adults aged 50-65 get Parkinson’s.
My case is very mild, but because there is no cure I’ll always have it. I frequently see a doctor who specializes in Parkinson’s, and she’s upbeat about my prognosis. “When you’re 90 you may need a wheelchair,” she says. She is tweaking a drug regimen for me that is reducing the symptoms, and almost every day after school I head to the gym for physical therapy. However, I still limp and I can’t always use my right hand for typing.
There’s an upside here in that we can use this as an educational opportunity for the students. Next week I will discuss it during the televised morning meeting, and I’d be happy to visit any classroom to answer questions. One of our school’s hallmarks is that it’s a caring place that accepts so many kinds of people, and here’s another chance to show it.
I’m open to any suggestions you have, too, about how we might use this information to benefit our terrific students.
Just don’t ask me to take a typing test!
Cordially,
Bruce
P.S. There’s that saying, “save the best for last.” Well, I’ve worked at many places, and BBL is definitely the best. And I’m sure that it, and I, will last a long time.
Here’s the follow-up email from my school’s principal, Mr. Shubert Jacobs
Date: Fri 1/11/2013 7:16 AM
To: Bruce Ballard, EntireStaff
Hi Bruce,
Thanks for the update and choosing to be vulnerable. We will do all we can to support you.
Shu
You are extremely lucky to have the support of everyone at your school!