Television, Radio and Parkinson's Disease

Makeup? But it was not even 7 AM.  Right, it was television after all. I had to look my best even though I was representing a community of people who struggle every day and every night with a degenerative, chronic and incurable disease.  It somehow seemed terribly ironic.  Add to that the fact that I was trying to cope with the worst cold I had had in years, requiring a steady supply of tissues ready at hand. I had this pronounced fear that on live television I was either going to start sneezing (which I had managed to do 15 times in a row - a personal best - before I left my hotel room) or fail to recognize that I was dripping excretion from my numb red nose.  How was I supposed to look relaxed and communicate effectively in the four-minute "interview" jammed in before the news? 

Fortunately, while we waited in the green room with Sue (my Parkinson's New Zealand support person) I remembered some of my media training. "Don't let the interviewer control the agenda. Make sure you get across your message regardless of where the interviewer is going." Of course, that's easy to say when you know what questions are going to be asked, but in this case I walked onto the set, shook hands with the two hosts, sat down, dabbed at my nose and sniffed a little to make sure, then heard somebody say, "3, 2, 1. Rolling". A little more than three minutes later (they were short of time in order to hit the news at the top of the hour) and it was all over. No retakes, edits, outtakes or "can we try that again?" I waited patiently until a pause for commercials, got up, shook hands with my hosts (I did not even remember their names) and was escorted back to the lobby and outside.

It was not until after it was all over and I was reviewing the video online that I actually thought about what I had just done. Apart from a little tremor, I looked relaxed and "normal", not at all like a person with Parkinson's. How can you communicate that sometimes you shake so badly you can't get food to your mouth or drink a glass of water? How do you tell people that you never sleep through the night and wake up exhausted most mornings? How do you explain the embarrassment and confidence-crushing aspects of the disease? For some people with Parkinson's there is freezing of gait resulting in one being unable to move, looking more like a statue than a real person. For others it is flailing about, twisting and writhing uncontrollably with dyskinesia (a result of the medication), resembling a person possessed. So the uninformed public remains ignorant about Parkinson's because makeup and self-control for a three-minute spot may leave the impression that the disease is "not all that bad". I suppose that's the nature of the myopic beast called television. 

Radio New Zealand presented a different problem. No makeup was involved, and I was given about 15-20 minutes. But since most of the symptoms of Parkinson's can only be seen, not heard, how do you effectively communicate what it's all about? For some reason I was disappointed in the radio interview. Perhaps it was the fact that the interviewer, like me, was suffering from a bad cold, except that he was working from home and was not actually present in the room. More likely it was my discovery that the interview had been taped rather than being live, thereby giving room for editing without my involvement. However, I took some solace from the realization that both radio and TV have a disadvantage when dealing with Parkinson's. Who is going to question the legitimacy of such a devastating disease? (Okay, besides Rush Limbaugh)

The dilemma remains. If people with Parkinson's actually confront the public with a full display of their symptoms, sharing the painful and functionally debilitating symptoms, as well as the soul-crushing non-motor aspects of the disease, they will doubtless be accused of acting (as was Michael J Fox) and/or looking for sympathy. So, in large part, the public knows little about PD. For most, it remains a relatively unimportant affliction of the elderly; shaking and little more. All the more important to take every opportunity to correct the fallacies and misunderstandings.