Two Types of Progress & Shared Responsibility

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Whoever decided that RA “progressing” means it gets worse probably didn’t have RA.

RA progress is always bad

umbrellaI have a new symptom in both my hands today. When I try to hold onto something firmly, my hands cramp in pain and contort to an odd position. And I drop the whatever. This morning, it was an umbrella.

My feet have done this for years, but I’m not usually trying to hold an umbrella with them.

The foot cramping increased a lot over the last couple of years so I asked the Dr. Smart Rheum about it last year. Doc said, “We see that in a lot of our RA patients. There’s nothing that helps it.”

Tonight I had to color my hair. Kim, the super-hero hair dresser, has been out sick, busy with her new baby, and too much in demand. My fingers were pretty angry about my persistence to get this accomplished. This new symptom is going to progress from annoying to exasperating very quickly.

Meanwhile, a different kind of progress is made

While I was fighting with my hands about my hair, I entertained my brain by listening to a British Medical Journal podcast about “Shared decision making” in healthcare. It was electrifying to hear experts debate the most effective ways to involve patients in decisions about their health. In Part 3, ePatient Dave deBronkart used me and my “Mother of a Patient Voice” illustration. It was cool to hear my name, but all three podcasts were intriguing.

The discussion was sparked by the Salzburg Statement, a call to action by 58 experts from 18 countries. Check out the post explaining the Salzburg Statement on Shared Decision Making: “The pivotal distinction here is the difference between informed consent, in which the physician assesses the options and selects one, and gets your consent to do it; and informed choice, in which clinicians tell you the options, with all the pros and cons, and let you choose, based on your preferences.”

NOTE: Some of you on Facebook or Twitter listened with me yesterday (Monday) to the live broadcasts from the Netherlands of the TEDxMaastricht international conference on the future of health. American e-patient advocate Dave deBronkart spoke around the theme “Let Patients Help,” using RA Warrior’s bone scan as an example. I’ll add the link here to the video when it’s available. Don’t miss it – Dave raps!

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Kelly Young. All rights reserved.

This entry was posted on Wednesday, April 6th, 2011 at 6:00 am and is filed under Living with RA / Managing RA. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.


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