This web site supports the Peripheral Neuropathy
Support Group of the DC Metro Area. Our goal is to help PN patients and
their families and friends throughout the Washington DC Region.
(last update: 11/06/2018)
A Support Group Near You?
At the current time, we are the only such group in the DC area, with some people traveling quite a distance. There are hundreds of thousands of PN patients in the DC area, with a like number of caregivers. Many others are impacted when, as symptoms intensify, patients cannot maintain their activities, including work.
One of our goals is to help other groups form, to be closer to their participants.
Our Last Meeting: 2018-Nov-3 We had a
normal support group meeting in Annandale. 20 in attendance with three new patients and their caregivers.
Highlight: a harrowing tale of poor medical care using narrowly focused specialists. Our member was in great pain, with a variety of problems. Being loaded, over time, by her neurologists with increasingly hard-to-handle pain meds. Faced with a recommendation to start an opioid, she decided, on her own, to instead go gluten-free for two weeks. All symptoms dramatically improved (except, of course, her PN-damaged balance). Doctor's response to this good news? "You should probably resume taking the meds we recommended." What???
Take-away: It is difficult within Medicare to obtain high quality, diagnostic-focused primary care. When there is a clear diagnosis of PN, care can default to specialists who may not be trained and skilled at the broad approaches needed to detect concurrent issues like gluten sensitivity. (Other medical people can be blind too: or another reason, she spent a few days in a nursing facility. They refused to honor her gluten-free diet and she was immediately back in pain.) She is now doing well on a gluten-free diet. Really LIKES the special bread her daughter has found (No, I didn't get the name of the product.)
Broader Take-Away: The group greatly benefits when you bring your stories.
LowLIght: Steve got mad at me when I dropped too deeply into my Debbie-Downer "The sky is falling" language. My wife wasn't there to punch me in the shoulder.
Things are stirring: I have referred to PN as "being the least-known, wide-spread disease" That's not good. The Foundation for Peripheral Neuropathy (FPN) has gathered together some folks in an effort to hack away at "The Awareness Problem". Especially Congressional Awareness or lack thereof.
This is a link to the Clinical Trials portion of the Foundation for PN website. On that page is a link to the "Antidote" site that will
We want to have useful blog posts
But, so far, we have only done a few. Anyone want to volunteer to write a Blog? You can add comments -- but we need interesting posts!.