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Living With Parkinsons. Part One – Are You A Passenger Or Freight?

Editors Note:  I am pleased  to finally welcome Dennis O’Donnell to The Bizzy Life. Dr. O’Donnell is not only a great friend, brilliant economist, solid fly fisherman, and a faithful Irishman (he and his family even have their own brand of Irish whiskey), he is also one of the bravest and most positive men I have ever met.  For the last several years Dennis has successfully battled Parkinson Disease.  In this first installment of a two part series on the complications of living with Parkinsons, he covers the difficulties of travelling.  Welcome Dennis!  Tim O’Leary

When you suffer from Parkinson’s Disease, there are few things more complicated than travel, and when I hear someone say “Oh, I know someone with Parkinson’s”, I thnk I have encountered someone who will unwittingly either make my life very, very difficult, or hopefully be intuitive enough to help solve my problem in a thoughtful way.

For a person with Parkinson’s, there are few things more complicated than travel. When an airline tells you “those 20 extra minutes should be no problem for you,” it is clear you’re about to be done in by someone who is going to define your problem for you. What you wanted to hear was “could you please tell me what impact the changes in your flight itinerary are going to have on your disability?”,  thus signaling that the person is going to help you solve your problem in a thoughtful way and work with you to help solve the problem.

I was recently rebooking existing airline reservations because the airline had changed the second leg and the final flight time on a long trip, increasing a layover at an intermediate destination from 3 to 7 hours, and delaying my final destination arrival time by 20 minutes. This pushed my arrival time beyond midnight in the middle of winter in Montana. This paled in comparison to the difference in managing seven hours in an airport,  as opposed to a two hour layover, a two-hour flight, and then a three-hour layover. This double move on the part of the airline to an existing reservation seemed like just another annoyance in what I’ve come to call “travel land.” This is a place where humans are cargo and revenue units; not people anymore.

The one hour phone call that this combination of people management and logistics took to resolve is the type of complex problem someone with Parkinson’s can face in many different circumstances. The problem arises from the fact that Parkinson’s is a condition where you are “on” sometimes and “off” at other times. In general terms, the “off” state for Parkinson’s is one where you move very slowly, freeze up, are stiff, and hardly able to walk; while in my case experiencing noticeable hand tremors.

The “on” state for many persons with Parkinson’s, until the ending stage, is a time when you are able to move fairly normally, the tremor is hardly noticeable, and though while stiff, it’s not too far from what might occur with aging.

The difference between the “on” and “off” in most cases is that the medicine the Parkinson’s person is taking is working to effectively suppress the symptoms. Sometimes it works; sometimes it doesn’t.

As a result of this switching from one state to another some people come to think they understand Parkinson’s from the” on” point of view, thinking that the “off” situation is potentially fake; or that it exists because of some mistake on the patient’s part such as not taking meds properly or not being tough enough to manage the problems. It is unclear whether these people come to this conclusion because that’s the experience they have had with people they actually know who have Parkinson’s, or whether it is based on their general world view that people should just toughen up and overcome the problems that vary over time.

The alternative scenario would be those who come to understand Parkinson’s from an “off” point of view. They understand that your default is “ off” and being ”on” is a blessing resulting from the proper use of medication, getting good sleep, avoiding stress, a commitment to healthy exercise and some magical alignment of the stars and your metabolism .

Even with all of these possibilities being able to control when you’re “on” as Parkinson’s progresses is increasingly unpredictable and difficult. In this hour I wound up dealing with people who had each perception. My response to the phone voice on the other end who had just said, “those 20 extra minutes should be no problem for you” and became a neurologist as well as airline representative was to suggest that we needed to work on the reservation change and that her attempt at being a doctor was inappropriate. I thought this was a well-intentioned attempt to stay on task in my negotiation. She obviously didn’t. A condescending voice retorted “I’m not playing Doctor, you now have 7 hours to get ready for that flight which is 20 minutes later than you had before.” I began thinking where in the Parkinson’s literature and my experience was this magical 20 minutes discovered. And then become the test of whether or not I am living up to the standard defining quality Parkinson’s behavior. As you might imagine I was focusing entirely on the problem of dealing with the 7 hours of medication management, not the 20 minutes of extra travel she was insisting on as the point of reference. It was clear that she was insisting in an unrelenting way on her point of reference. In part to test that hypothesis I responded “we will take a flight the next day”. She replied “that will cost you under our rules”. Hypothesis confirmed!

I said “you mean there are no alternatives?” The response was no longer remotely friendly but now intentionally officious and she blurted out, “you can pay the change fee plus the additional airfare charges for you and your wife”. My response was, “you mean there’s nothing we can do about my being dropped due to a schedule change by the airline in Denver at one o’clock in the afternoon while not being able to get to Montana until midnight without paying an extra sum of money when there are at least three flights in between and flights the next morning?” Her response was “No, I’ll check with my supervisor on the cost to you and your wife”. Click!

Suddenly I was on hold listening to that numbing music that once took you “up, up and away” to dreamy places in comfort. After about 3 min. of listening to horrid music blaring out of the cheap speaker on the phone at too loud an amplitude, causing feedback and bizarre tonal shifts, I reached to switch off the speaker. I was on speaker because my hands sometimes shake so bad that I wind up talking while banging the phone against my head to the rhythm of Brazilian music. Trying to switch the speaker off is tricky with a trembling hand. I cut the connection. Yes, there is a magical combination of keystrokes that invariably only a trembling hand can activate. This combination always leads to cutting off phone calls if you have Parkinson’s. How did they program that? How is it deactivated according to the manual? Where is the manual?

Now what? I can just lick my wounds taking some blame that I didn’t handle that very well and accept my fate at the hands of some airline efficiency programmer who is likely controlling policy by maximizing a revenue function based on a Ramsey pricing system designed by an economist. I’m an economist and now I feel a victim of my own science. I will not accept this situation!

So now, tremor in check for a moment, I redial the airline knowing that I’m playing Russian roulette with my reservation and the nature of the next airline representative is at best a random draw. I, of course, get a different person. So we must go through the whole story all over again. After pointing out the change in my reservation I hear the following “I notice you have requested wheelchair assistance between your flights. Is that correct?” My response is ” yes I have Parkinson’s and can have mobility problems depending on how I’m doing at the time” The airline representatives response is “I see, I have a neighbor who is wheelchair-bound sometimes and his friends take him fishing which often means they have to pick him up and put him in a seatbelt equipped chair in the boat. He loves to fish. I’ve often wondered if he has Parkinson’s”

I freeze. At this moment I have no idea which fork in the road we are about to take. Is this person going to be from the “on” perspective or the “off” perspective? That is the question of the moment. The airline representative’s tone softens and she says “how can I help you with your problem? It looks like you have a seven-hour break between flights and a midnight arrival in Missoula after starting that morning in Costa Rica at 7:30 AM. Whew, that’s exhausting to even think about”.  The air quietly flows out of my lungs and I say “I’m unsure whether I can really manage that situation”. Her response is, “let’s see what we can do”.  Oh joy, she is going to let me evaluate my situation and help in whatever way she can. She’s going to treat me as though my default situation is “off”. This means she’s protecting me from the downside risk rather than forcing me to overcome the downside by assuming the upside is attainable with some certainty through my efforts. “First, do no harm then, figure out what to do”. This is the mantra one needs to hear in my situation from the person helping you through a predicament.

In the end this helpful woman represented the airline very well and within the rules arranged for us to fly out the next mid -day with no extra airline charges while only having to pay for our lodging that night. Amazingly, during the course of this constructive change the first representative interfered, complained that I cut her off, and that the charge to us should be $500 each. The supervisor overruled and didn’t apply the fee. The airline now has a customer for the long-term. Even people with Parkinson’s have some choices. Too bad it can’t be when to be “on” or “off”.

Despite this reasonable outcome, not all problems were solved since I still felt that I paid too much for my ticket. So I vowed to ask everyone on my next flight to hold up a card telling everyone else what they paid for their round trip flight to and from equivalent destinations. I am not through with the fight against non-competitive Ramsey pricing and also being treated like freight not a customer. One fight at a time is a reasonable rule of engagement with monopoly practices in markets.

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2 Responses to Living With Parkinsons. Part One – Are You A Passenger Or Freight?

  1. Daphne says:

    Cargo and revenue units! You sure got it!

    Thanks for sharing this.


  2. Upon printing out the reservations on line I discovered a problem with one of our party who wasn’t booked on our flight from Phila to Denver. I called and was told they could not have her on the same flight as there were no more free ticket seats available. I questioned them about why they changed us in the first place and was told it was in the best interest of the airline. They refused to accomodate us due to policies regarding free tickets. We did not request the change and have to re-arrange our lives to suit the airline! They eventually changed Donna’s husband to the United flight which she was bumped to, but we are still unhappy to say the least!

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