Lessons From a ‘Difficult Patient’ - Cure Parkinson's

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Lessons From a ‘Difficult Patient’

MBAnderson profile image
7 Replies

"Sal was the kind of patient that doctors strive to avoid. But for one medical student, he provided an education in compassion."

"It was my first lesson in recognizing patient qualities that benefited their health but not the doctor’s workflow. Doctors did not commend patients who expected to understand all their test results, or who pushed back against treatments that were only weakly supported by evidence, ..."

"The only patients deemed more difficult than insistent patients like Sal were his opposites: patients so overwhelmed that they stopped wanting to pay any attention to their illnesses at all."

nytimes.com/2022/10/18/heal...

These Doctors Admit They Don’t Want Patients With Disabilities

When granted anonymity in focus groups, physicians let their guards down and shared opinions consistent with experiences of many people with disabilities.

nytimes.com/2022/10/19/heal...

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MBAnderson profile image
MBAnderson
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7 Replies
park_bear profile image
park_bear

Study corresponding to 2nd article:

healthaffairs.org/doi/full/...

kaypeeoh profile image
kaypeeoh in reply to park_bear

"They want their pet peacock on the airplanes and whatnot, and it makes it very difficult..."

Of course, a service peacock is necessary for those with disabilities.

There's always two sides to an argument. So far my doctors haven't tried to dump me from their practices but I think it's because I keep my mouth shut as much as possible.

bookish profile image
bookish

Wow. Thank you.

Great post, thanks. I’m convinced that promoting the fullest possible understanding of a patient’s condition is an essential part of treatment. It enables self management & empowers the patient & practitioner to work collaboratively. Most importantly of all it enables the practitioner to say the most important words in science…. “I don’t know”!

ddmagee1 profile image
ddmagee1

You and I are the same age, MBAnderson! These are both excellent articles! Thanks for posting them! I may be a bit like Sal, with my Docs, because I question my treatment and support. For example, they call the neurology building a clinic, but only have Dr. Office visits. There are no therapists, for speech, swallowing, walking support etc. In regards to the second article, since I’ve been diagnosed with 4 neurological ailments, over the years ( Childhood Non-Paralytic Polio, Cerebellar Ataxia, Seizure Disorder, and Parkinson’s Disease ), I am now assigned, seemingly, to palliative care! In other words, hands off, for the most part! When I attempt to discuss this with my neurologist and my Osteopath they don’t respond well - react with indifference! After all, the Medicare managers ( not Doctor’s ), call the shots, here in the USA. Recently, I had episodes of Rectangular Double Vision, along with more trouble walking, and Ptosis of one eye, so when the neurologist heard about that, he thinks that I, also, have Myasthania Gravis, and sent blood samples to Mayo Clinic, in Rochester, Minnesota, so we will see how that all turns out! So, I guess he shows a bit of a concern! Since the COVID Pandemic era, I have noticed a number of medical pros, seem to have gotten somewhat apathetic! Anyway, I can relate to yours and other PD patient concerns, and, as always, I get my best understanding, support, and help, on how to deal with living with neurological disorders, from HealthUnlocked.com - this forum! Again, thank you for your contributions! You are appreciated!!

MBAnderson profile image
MBAnderson in reply to ddmagee1

Thank you. Where do you live?

ddmagee1 profile image
ddmagee1 in reply to MBAnderson

Northern Michigan

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