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A Care Partner’s Advocacy - a time when I missed the mark

Traveling is not easy for my dad, a 78-year-old man who was diagnosed with Parkinson’s disease (PD) in 2001. At the same time, him missing out or feeling that he is being left out, is something I’m so sensitive to that I’m willing to put in the effort to make sure he gets to participate whenever he’s up to it.

Most recently, that occurred in a keynote speech I gave with my good friend, Larry Gifford at the Barrow Neurological Institute with the Muhammad Ali Parkinson’s Research Center. Our travel to the event was relatively uneventful (see: successful!). The flight was relatively easy, thank you, Southwest (something they probably haven’t been hearing a lot of recently), the hotel was comfortable and accessible and our hosts were awesome. We took a tour of the Muhammad Ali Parkinson’s Research Center, had a fantastic dinner with our hosts then rested for the keynote the following day.

The keynote went very well. Dad got to see his favorite Neurologist, Dr. Holly Shill, for the first time in almost 10 years. Dr. Shill was the first doctor in my dad’s PD care who addressed his emotions - telling him it was okay to be scared and giving him a hug, all the while pointing toward the positives.

Our trouble started on the flight back after the conference. To begin - we were both very tired. All the small details of travel plus an energetic keynote speech with plenty of interesting challenges took it out of us. The flight was delayed by weather - no fault there. When we got on the plane, we went first as dad needs the wheelchair as far as it will take him - in this case, right to the end of the jetway. To keep his walking distance short, I give him my arm to balance and he shuffles to aisle seat in the front row. This is purposeful as, if he needs the restroom, this is also the shortest distance he’ll have to travel, with no stepping over anyone. My dad has a 55 degree tilt to the right along his spine, known as Pisa syndrome (it’s just what it sounds like). I give him the middle seat to lean over as that’s the way he tilts and I sit in the window seat. This was no problem on a mostly full flight on the way down - people saw his tilt and found another seat. It looked to be the same here on what we were told would not be a full flight. The last passenger gets on the plane and almost falls in the middle seat.

“Are you saving that seat?” she asks.

“No,” I answered too quickly, then quickly added as she began to sit, “I don’t want to dissuade you, but my father has Parkinson’s and--”

“Oh that’s okay,” she cut me off. “I work in a dentist’s office with a lot of elderly people.”

Her reply was so quick and sharp and my energy was so low that I didn’t know how to address it. So, I took a breath, then sighed in resignation. Over the course of the flight, my dad continued to tilt right, as he has to due to his spine, leaning into her space. She, understandably, began to tilt into mine. I made a new friend in the wall. It was a very uncomfortable flight for all of us. There were open seats behind us. I spent a good deal of time being angry, but not knowing the best way to address it and recognizing the potentially awkward situation of being on a plane, I kept it in. I did have to do a few things to help my dad which were made more difficult by her taking the middle seat - a seat, as per Southwest Airlines rules, she had every right to.

After cooling down and thinking about it, I wasn’t really mad at her. I was mad at myself for now advocating more clearly for my dad. As his care partner, that’s my job. I should have taken the time to explain to her, “of course, you are welcome to this seat, and I appreciate that you work with elderly people in a dentist’s office, however, this is a unique situation that might make all of us uncomfortable based on a condition my dad can’t control.” I also recognize if this is truly a problem, in the future, we need to book an extra seat. That’s on us. I was hopeful in the moment that this woman might be able to read the situation the way I wanted, but the truth is, that’s not a solid plan for advocacy. As an expert in communication and teaching people to speak up and share their truth, I failed in this instance. My dad did tell me on the way home that he was uncomfortable on the flight home. That’s my fault.

Lesson learned; I’ll do better in the future, dad. I must be the change I wish to see in the world.

Robert Cochrane, PhD is the Founder of Yes, And...eXercise! a 501(c)3 non-profit that uses improvisation and storytelling improve quality of life measures for the entire Parkinson's community.

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