parkinsonSpace

Should I tell people I have Parkinson’s? What are the benefits of doing so and what might hold me back from saying it?

Well, since I’m writing about it in a blog I can say that I have told people and I do think there are benefits from being open about the condition. When I was first diagnosed I told my immediate family and my employer then my friends when I saw them or spoke to them. To my children, who were quite young at the time and had seen how I had problems with my hand, we said that I had a condition that would not get better and that it affected and will affect my mobility. It was a few months later we told them it was Parkinson’s.

At first I would tell my students that I had “a medical condition” that prevented me working as previously, or at least explained why I might be slower or forgetful in answering emails, in marking, etc. But after about a year I thought that there is little point in being so vague and impersonal. So now I tell people what it is and explain some of the symptoms appropriate to the context. This way I hope to prevent them from being disconcerted.

I had a case in point this week. I was doing oral examinations as external examiner at another university, but I had forgotten to mention Parkinson’s beforehand. So, at the beginning of each interview I briefly explained to the student that I have Parkinson’s and that this means that my voice is softer than normal and my face is often expressionless but that they shouldn’t be put off by this; I assured them that I would be listening with keen interest. Was this too much? Do I need to tell everyone so directly? I don’t want to become “the Prof with Parkinson’s” nor to give the impression that I’m defined by it. Indeed, I hope to raise awareness about the condition and help those around me see People with Parkinson’s as individuals who may carry on leading an active life personally and professionally. I’m not ashamed and I hope that people I meet feel relaxed about it.