Shakin' Street — A Parkinson's Blog

Since (reluctantly) joining the Parkinson’s Club, I’ve been surprised at how many people I talk with are frustrated with their neurologists.

“He doesn’t listen to me.”

“The appointments feel rushed, and she’s just going through her checklist.”

“A six month wait to see him, and all I got was a new prescription.”

Part of this is because the system is broken.

• The PWP/neurologist math — too many of us, not enough of them — creates unconscionably-long wait times for appointments.
• Neurologists under time pressure may be tempted to take shortcuts.
• Patients unfamilar with the process may walk in unprepared to take advantage of their time with an MDS.

Unfortunately, the system will not change to suit us any time soon. Unless you’re extremely well-connected, the wait times are what they are.

In many markets, there may not be another neurolgist to switch to if we aren’t happy with ours. To paraphrase Stephen Stills, we may have to love the one we’re with.

It’s up to us to extract maximum value from each appointment.

A First-Appointment Bomb

My first neurologist appointment was not a rousing success.

Besides confirmation that I had Parkinson’s, I didn’t know what I was looking for, and came in unprepared. The doc was counting the days until retirement, and not particularly enthusiastic about the task at hand.

20 minutes after walking into the exam room, I was on my way back to the car with a tentative diagnosis, a prescription, and no idea what to do next (besides finding a new dotor).

Treat Your Appointment Like a Sales Call

I spent 30-something years in sales — nine of them as a sales trainer. Ruminating about what went wrong in my first visit, I decided that a doctor’s appointment was just another sales call.

I wanted to establish a mutually-beneficial relationship with a stranger, and get the information I needed to achieve my goals.

For that to happen, I needed to walk into the next appointment with a plan.

It took a couple of appointments to refine the approach, but my last few neurologist visits have been productive. With a few enhancements I found online while researching this article, here’s my system for pre-visit preparation:

• Track your symptoms and challenges as they happen: There are several good phone apps to do this. I use StrivePD to record my med adherance and exercise sessions. StrivePD also records tremor duration on a daily basis. I record other symptom changes in Evernote, but I’m not thrilled with that. I’ve begun experimenting with Mejo, a “care companion” site that may be more suitable.
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• Brainstorm before the appointment: Review your “tracking” notes from the past few months. List symptoms, side effects, and any other challenges you’ve experienced — on a document you can bring with you and refer to during the visit.
  
• Make a written list of questions to ask. Don’t trust your memory — you will forget something important, and it’s not fun to realize on the drive home you forgot something big. Write everything down
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• Prioritize: If you can only solve one thing at the appointment (the “Magic Wand” question), what would it be? Write this at the very top of your notes.
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• Practice if necessary: When I was in sales, I hated “role-playing” exercises, but they always helped me when I did them. Football teams practice — we can, too.
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• Bring someone with you to the visit: Since my diagnosis, I’ve noticed I don’t pay attention as well as I used to, and don’t think as fast. Follow-up questions that would have occurred to me quickly now show up hours later. My wife is an invaluable partner at my appointments — she thinks of stuff that gets by me, and helps make sure we get what we need.
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• Be assertive: If the doc tries to slide past an important factor, ask “How will this affect my top priority?”
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• Have a Plan B in case things still don’t go perfectly: The Parkinson’s Foundation has this suggestion: “Sometimes the appointment schedule does not allow you to ask everything on your list. If you cannot get all your questions answered at the visit, ask the doctor or staff at the clinic who to contact with unanswered questions or new concerns.“

It may seem unfair to put all of this responsibility on the PWP and caregiver. Maybe some day the system will change and become more user-friendly. But for now, we’re living in a self-serve world. It’s up to us to get what we need.

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Bonus for Those Who Read to the Bottom

Weird Stuff From Japan Edition

Guitar Wolf is a Japanese power trio that’s been active since 1987. I hope you like explosions.

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No idea what these ladies are trying to say, but they are persuasive.

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Same band, same song, but ska this time.

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I feel safe in saying you won’t see this in another Parkinson’s blog this month.

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I’d like to believe they did the whole video in one take — it’s all kinds of awesome. The guitar solo beginning at 2:05 is something to behold. The band is called Sakuran-Zensen, and the song is “Taximan.”