Five Things I Think I Know About Surviving On the Job with Parkinson’s Disease

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6 years 11 months

I was 46 years old when diagnosed with PD in 1996 and have since been tenuously hanging on to my job as a lecturer at a Japanese college. The cross-cultural aspect of what I do makes for a different wrinkle in the job mix compared to working in one’s own country; nonetheless, the following collection of survival ideas and observations may apply in general circumstances to those with the unenviable task of dealing with Parkinson’s disease on the job.

1. Staying on Top

The big thing for me with work and PD is staying on top of what you are dealing with. You have to constantly monitor your limits and limitations – and recognize these things will change over time – so that you can figure out some strategies for coping. Arguably, all the points raised here come back to this basic idea. To me, PD isn’t a disease people “handle” or one that’s best confronted head on. It’s a “weasely” disease that you have to weasel your way around. For example, it always takes me a ton of office time to find and collect books, notebooks, papers, and the like before classes and meetings. For quite a while, I was constantly late, rushed and disorganized for everything. Then I put a clock on my office wall and set it twenty minutes ahead of real time. Operating on this system makes me think its twenty minutes later than it actually is and has helped me catch up to everybody else on the normal time schedule.

2. Telling

Who do I tell? What do I say? Once you’ve been diagnosed, these can be tough questions. But, who to tell and what to tell, doesn’t have to be a big deal, especially initially. My recommendation in this regard is not to rush a decision. You may feel like dashing into some administrator’s office and having a heart-to-heart, but is this really to your advantage? Take some time to learn how you react to the high-powered meds you will be ingesting and how they affect your job performance. In my own case, at first, there didn’t seem to be a compelling argument. My policy ended up being kind of ad hoc. If people noticed something and asked in the proper context I respondedalong these lines: “I’ve got this disease called Parkinson’s that sometimes slows down my movements and causes tremors. I take medication that mostly keeps things under control, but once in a while you may see me struggle a bit.” If I wasn’t asked, I didn’t tell.

One thing that became clear early was how unobservant people are generally. You may think you’ve got this disease and everybody is watching your tremor and wondering why it’s taking you thirty minutes to finish your soup. You may think having PD is the center of the universe, but most of the passing world isn’t paying any attention at all. To illustrate the point, the president at my college didn’t know anything about my situation until I met with him to request a medical leave of absence.

At some point, when your work starts going downhill, recognize you’ll be forced to talk about things. You can either take a relatively relaxed approach or spend time and energy worrying about it all.

3. How Long to Hang On

Be prepared in knowing that your work standards and abilities will go down. This is a riff on point two, but deserves elaboration. The first sentence is simply a fact: As time goes on, it’s going to get tougher and tougher to do your job. If you need the money (and who doesn’t?), you’re left with a balancing act between being competent at work and taking home a paycheck. Of course, this trade-off will depend on individual circumstances; a lot rests on how much of your self-image is wrapped up in what you do.

My take on this issue is that most folks should hang on to their jobs as long as possible, for several reasons: financial survival, as noted, and the value of a job as a diversion. The less time people with PD spend thinking about having PD, the better their quality of life. Continuing to work offers the best diversion from looking at life in PD mode. On the flip side, I have several friends who retired early and whose symptoms have decreased markedly because they have done away with work-related stress. Unfortunately, for most of us, early retirement isn’t an option. Finally, when your work skills have eroded to a point of no return, you’ll likely know it. You can walk out the door yourself or have someone else tell you it’s time to go.

4. Organization/Disorganization

Many readers will be aware of the likelihood of a cognitive deficit component of PD and/or PD medications. One manifestation of so-called “executive level” malfunction is an inability to organize. I try to maintain files and to have a system for finding things, but I don’t manage either task well. My office is usually a disaster area consisting of piled books, scattered papers and pressing school business memos that I’m weeks late responding to. But I know all this, so if I can’t, for example, quickly find a class handout, I just sit down at the computer and try to recreate it. It takes forever, but not as long as a time consuming search resulting in failure. Sometimes it is easier to reinvent the wheel.

5. Don’t Obsess

Whatever happens, don’t be too hard on yourself. For most who work, there are more than enough people around willing to give you a hard time when you've screwed up, so why pile on by adding your own voice to the chorus? Things start to get dicey with the whole question of “Did having PD contribute to my making this mistake?” Well, maybe it did and maybe it didn’t, there may be no way to know. In general, it doesn’t strike me as useful to pursue this line of inquiry; obsessing about PD on any level is pretty much a waste of time. It’s more important to learn from the error, maintain a thick skin and move on.

To conclude, one of the problems in writing a piece of this type reminds me of the often-quoted line, “All politics is local.”  In a somewhat similar vein, one might make the statement, “All cases of Parkinson’s disease are emphatically local.” And maybe that’s one of the reasons I see so little writing on the common, practical, day-to-day issues people with PD wrestle with all the time. Consider the present effort a modest nod in this direction of commonality and “real world” concerns.

From the philosopher Spinoza, a definition of intelligence:

"The extent to which you accept things as they are because they have to be the way they are."



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