Peripheral Neuropathy Support Group
 of the
DC Metro Area

No Cure
No "Race for a Cure"
But Hope, Advice, Info
      Mutual Support &
      Being Heard?
Yeah, We got that.

DC Peripheral Neuropathy Support Group

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Peripheral Neuropathy Support Group of the DC Metro Area
 
(last update: 7/9/2018)

This web site supports the Peripheral Neuropathy Support Group of the DC Metro Area, serving PN patients and their families and friends throughout the Washington DC Region.


At the current time, we are the only such group in the DC area, with some people traveling quite a distance.  One of our goals is to help other groups form so they can be closer to their participants. In June we heard from someone thinking about starting one in the Baltimore Veterans Association hospital. We offered to help them. The Foundation for Peripheral Neuropathy has some "how-to" material on how to set one up.

Note: See a discussion of the security of this sign-in on the Op Stuff page 
Our Awareness Efforts
:-( The Washington Post has never had an article about PN


Despite PN's wide-spread prevalence (estimates are in the multiple hundreds of thousands in the DC area), the Post has before never addressed the topic. We have engaged in a months-long effort to get an article about Peripheral Neuropathy published in the Washington Post's weekly Health & Science section. A husband and wife team of our members, both with PN, have taken the lead on this. In early June we heard that the Post editors were saying positive things about the article they submitted.
And now they've actually published it!.
Lynn & Bob - > BRAVO!

At our June 2nd meeting the members wrote some supporting Letters to the Editors. Don't know if those helped the Post make its decision, but that's an example of the kind of bit-by-bit action we can all take to make the future better for us, our kids and our grandchildren.
Money?

We have been doing Pass the Hat collections at the meetings (documented in the Op Stuff/money page).  Recent uses
  • Expanding this web site - this is an annual expense (~$100 each July). We're now beyond our "free" 3-page limit. Judge for yourself; we're trying to make good use of your money.
  • Rented a video projector for the March 3rd meeting
  • Paid for a Tai-Chi class in April - we had tried to get a class for years, but instructors are scarce and usually busy on Saturday afternoons.
  • Supplies - name tents, some printing
Some members suggest sending a contribution to FPN - we need to decide!

An official charity? Not yet - 501(c)(3) status takes time and effort - we need some adult time and help to get our act together.

Our Last Meeting: 2018-June-2

We had a semi-normal support meeting. As we usually try to do, we went around the room and folks shared their ideas, experiences and frustrations. Peter endorsed his inexpensive TENS machine. But first, everyone wrote a personal letter to the Washington Post in support of our campaign for a PN "Awareness Article". We put a bunch in the mail.  Then we had a discussion with Carol Brooks, a genetics specialist coordinating patient education for a company testing a treatment for a rare genetic version of amyloidosis.

Want to see what we've been doing? Take a look at our Details Page 


Recent highlights:

  • May 5: workshop on physical and occupational therapy
  • April 7: workshop focused on customizing Tai Chi for PN
  • March 10: public Patient Conference at DC's Sibley Hospital, sponsored by the Foundation for Peripheral Neuropathy. One result: offers from volunteers to participate in the PN Research Registry have increased dramatically.
  • March 3: presentation on science behind exercise and mobility with PN.
  • Feb 3: a BUNCH of new folks. They'd read about the group in The Golden Gazette. This has got us thinking about trying to contact some other local papers.
  • Jan 6: Meeting cancelled! Yes, we're snow & ice wimps. And proud of it.
  • Dec 2: A health psychologist on practical aspects of living, thinking & talking about PN
  • Nov 4: A diagnostics specialist on the need to take a whole-body-&-brain approach
  • Oct 7: Q&A Meeting with the leader of the Peripheral Neuropathy Research Registry

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.  Plus some other things. We talked about it some at the July 2017 Pot Luck (Ya Should a Been There!) and will talk more at our Saturday meetings.

New to our site?
  • This Main page hits all our basics. Please check out our survey on this page.
  • Details page is an archive of materials we have gathered over the past few years, mainly notes and documents given to us by speakers and some self-generated docs. It's now organized chronologically, but could use some organization to make it more useful. The internet is a fire-hose and we really need a drinking fountain.
  • Blog page is a Work-in-Progress - it works, and there area few entries, but we need a "blogger" person.  Or a Social Media person (any Facebook lovers out there?). 
  • Future Meetings page has our calendar.
  • Op Stuff page has discussions about our operations, including money and operational issues we need to think about.
  • Our MemberStuff page is currently empty, but configured to be visible only to members. You have to login to see the page. We're still trying to figure out what it should contain. A private social media page (like a private FaceBook page) might work better.

In principle, we could have an online donation feature to give money to the group.  That is a subject for future discussion (we don't have a 501c3).  Meanwhile, the Foundation for PN will be happy to take money.

Membership - In January and February of 2018, I conducted tests of the "membership feature" of this site. I was almost ready to send out invitations, when other things got in the way. The new sub-pages of the Op Stuff page document how it will work. But I'm still not ready - more testing is needed. 

New to learning about Peripheral Neuropathy?

The Foundation for Peripheral Neuropathy has a new introductory <brochure> that hits all the right notes.

Come to our meetings. Or email us <[email protected]> or call us (301-263-0616). We're not smart enough to guess what you need or put useful pat answers on this web site. Besides, we need you, too. PN is a long slog and your willingness to come to our meetings and share your story is an inspiration to us all. So, come and see us. 

Want to know what Research has to offer?
  • As a starting point, The Foundation for Peripheral Neuropathy (FPN) has an excellent collection of links to research going back to 2010. Most are digests or summaries written for laymen, not high science.
  • Because scientific consensus on PN is so limited, internet browsing can be frustrating. The Details page is intended to highlight, comment on (and somewhat integrate) what we have heard in our support group meetings over the past few years.
  • The Details page contains links to various supporting materials. Those linked materials may have the the golden nugget you are looking for. But, like the rest of this internet fire-hose, they are more likely to be helpful if we can talk to you and direct you to things we found helpful. We're not research librarians, but we do want to help.
  • The <Western Neuropathy Assoc. site> has been greatly improved in the last year. It's Medical Literature page is done by a retired doctor who specializes in tracking PN research.

Want a quick cure?
The diverse experience documented in our survey results (limited as they are) supports the idea that simple answers are hard to find.
What Makes the Group go? 
- Attendance - when you come it is all worthwhile.
- Labor - Steve is constantly working to line up and coordinate speakers.  We average 2-3 a year. In 2017 we had 5.  I (Mike) try to keep the techy stuff going (web site, AV, survey and some presentations). Several members are active in helping suggest or coordinate speakers or sending questions or comments or phone calls.
- In-kind food donations. Several members keep us from starving. Makes a difference!
- in-kind handout printing donations
- A bit of Pass-The-Hat money

Interested in the inner workings of our group?
   Check out our
Operational page (OpStuff) for more detail on
  • Money and Organization - we sometimes need to spend real money. Pass the Hat
  • Membership What is it, How to do things (like private email) - I'm working on invites
  • This Web Site
  • Sign-Up Genius
Last Update: July 9, 2018
Recent changes to this site:
7/9   Calendar and event updates, 
        Washington Post article notice
        Expand discussion of Drop Foot treatments & Ossur FootUp <Details page>
Late January - changed our site name to www.dcpnsupport.org (old name still works)
1/23   Revised Op Stuff page including sub pages & adding Member How-To info
11/28 Blog Post on the Kaplan presentation
11/3   New Op Stuff page, Blog Post on pain & added resource/money discussion
Fall 2017 - made our site more visible on Google & other search engines.
                Search for "neuropathy support group dc"
5/4/17  Updated Survey results

Past meetings and materials

Go to the Details Page to browse the info we have collected.

Who Manages This Web Site and Says all these Silly Things?
My Name is Mike Foxworth (AKA Mike the Admin). I spent most of my career doing computer things, including many years programming web sites. But I have forgotten most of that stuff, so we are using the WEBS platform which makes it pretty simple to put this information out there. That's important, as life under Peripheral Neuropathy gets steadily harder.
Steve Klitzman, our Noble Support Group Leader, does his best to keep me under control.
My wife could have warned him.