Tuesday, April 26, 2011

Dr Demi-God, paging Dr. Demi-God... Helloooooo?...

Here is a refreshing look at the Doctor/patient relationship. (Hat tip to Bill Bell for flagging this.) I love the bit with the forklift. As much as we might wish that someone with the knowledge and power could lay a hand on our forehead and cast out our PD demon, it doesn't work that way. With this disease you can't afford not to step up and help out.

As people with Parkinson's we have to be unusually involved with our care. This is true because of three big factors. First, Parkinson's manifests differently in each person to such a degree that it can be difficult to standardize care. You have to be the authority on you. Second, if you haven't got access to a movement-disorder trained doctor you must take up as much of the information slack as you can. The unfair but unavoidable truth is that a general practice neurologist doesn't have the ability to dive as deeply as possible into the complexity that is Parkinson's when patients with everything from MS to migraines also need care. Third, let's face it, in our system we ration time with your doctor. You and your doc share the examining room with an invisible bean counter who is muttering in the background and pressuring your doctor to move on to the next patient. Even if your doctor is a demi-god, (hint: none are) This doesn't leave much time to pick their brain. So you get to be part of their brain instead.

And here is where something useful can happen. You demonstrate to your doctor that you have a good working knowledge of your disease as well as ideas about how care might go forward. This allows your doctor will see you more as partner in your care, someone to practice medicine with, not someone they practice medicine on.

If you are interested in finding information, where do you go? Two words: Support group. What? You want more than two words? Well you could always check out this post from a short while back.


ECleary78 said...

As always, I agree comepletely with you ideas about how we have to advocate for ourselves. My husband and I know more about his PD than anyone else with PD that we have yet met. This was disappointing and startling for us both considering how we have 4 months in and we've met people with as many years who don't even have the names of their medications memorized. I truly believe knowledge is the key to better treatment and higher quality of life. As you say, this disease is unique to the individual, so no doctor can ever know as well as we can how it's manifesting exactly or what it is we need. Thanks!

Peter Dunlap-Shohl said...

It's great that you are tackling this head on. One thing I didn't mention that I should have is that learning all this stuff is interesting in itself, whether you have PD or not. The brain is so complex and so fascinating. It's a bit of a consolation to me that I have learned as much as I have about something I otherwise would have been indifferent to.