Peripheral Neuropathy Support Group
 of
Metro DC

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

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: 12/18/2018)

10/29/18: Can't get no respect: First the TED Talk site flags "neuropathy" as a misspelling! Now the web editor's spell checker is doing it too. Time for PNers to Revolt?

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.

  • Member Bob Hansen is discussing doing one near Baltimore
  • Gerry Grey, the lifestyle director in Potomac Green (a senior housing community in Ashburn VA) has inquired about starting one after a well attended meeting.
  • Steve and the Foundation for Peripheral Neuropathy <FPN site> are trying to be helpful.
  • FPN has a lengthy "how-to" manual on support groups <PDF>. [Among many others, the Texas Neuropathy Alliance <NATX website> had a big part in this - Thanks Nancy Herlin!]
  • A shorter 6-pg manual <PDF> is from The Western Neuropathy Association <WNA website>. WNA's Organizational Genius, Bev Anderson, has used this to create the nation's widest neuropathy support network.  We may customize it for our area.
?
Should you Register? For now, don't bother.
     (But you can try - we got news this week that they made some progress on the issue)
     You don't have to register as a member to make use of this site. If you have already registered you can still sign-in for the member-only features that we were testing. One feature that was member-only, making comments on the Blog posts, has been opened to anyone.
     What happened? In July 2018 we found that a security upgrade by our hosting service (WEBS) made membership sign-in (an optional feature) more secure. But the upgrade crippled the software that runs the member registration process. No available date for its final repair, but some seem parts to be working. The Op Stuff page has a discussion of the security of this software, but that material has not yet been updated to reflect the security improvements.Testing of the members-only features has been suspended for now. We are exploring alternatives to implement those features.
Our Awareness Efforts
The Washington Post 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 had never addressed the topic. We 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, took the lead on this. Lynn & Bob - > BRAVO! Check out the 35 comments on the article; their variety is a suggestive indicator of our scientific uncertainty, the lack of consistent medical guidance & public lack of awareness.

       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. 
Money?

We have been doing Pass the Hat collections at the meetings (documented in the Op Stuff/money page).  Recent uses
  • This web site is an annual expense (~$80 each July and ~$20 in January).
  • We've rented a video projector a few times (~$55)
  • Paid for a Tai-Chi class in April and a Chair Yoga class this Dec.
  • 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.
Jan-5 We watched a portion of a famous 2015 TED Talk video on Sensory Substitution by David Eagleman. David is a "big deal" in developing aids for disabled persons, among other things. See his talk here: <David Eagleman's TED Talk>

    A treatment to stop PN’s neuron death could come soon or not for a long time. There seems to be nothing on the immediate horizon. Even if a treatment stopped all further cell death, there are millions of Americans already severely disabled. SO, is there nothing that can be done for the severely disabled or those about to be?
    The video shows how external sensors can be relatively inexpensively added and used by our brain to replace senses (like sight and hearing) that have been lost or absent. The external sensors demonstrated (in this case, for hearing loss, via a phone app and vibrators in the vest worn in the photo above) do not require expensive surgery or complicated computer systems. Sound ridiculous? Watch the video!
     Some questions we discussed, with group response shown in [brackets]:
  1. Could this be done to replace some of the sense neurons we lose with PN? [Perhaps]
  2. How might such senses be attached? [Shoes that signal to vibrators in a vest or leggings?] 
  3. What sensations might we want to replace? [Proprioception & pressure sensors in feet & legs. Others?]
  4. How expensive would they be? [Doesn't sound horrible]
  5. All of Eagleman’s examples required a “feedback” source to show the brain what a “correct” response is so the brain can learn how to use the new artificial sensor.  What would “feedback” be for an artificial balance sensor?  If other sensations (touch, heat/cold, damage) could be added artificially, what feedbacks would they use?
  6. Replacing sensory input is only half the problem. PN also robs us of the neurons needed to control our muscles, leading to muscle weakness and failure to balance and walk.  We showed some examples of “external” skeletons (exoskeletons).  Where might this technology go in the future?  [We talked about proposals to create exoskeletons using "smart clothing" with the ability to act as muscles]
  7. European insurance and government health plans are already considering or approving the use of some exoskeletons (in special cases). What could be done for that to happen in the US?
  8. If science could design either new sensors or new “muscles” what can we (members of a support group) do to make that happen sooner?
.
A practical example of the Eagleman concept? In the meeting, one member showed us her new strap-on flexible brace. She said it helped her balance a lot.  I have advocated use of inexpensive devices like the Ossur "Foot-Up," in lieu of braces, to lessen the risk of tripping because of foot-drop.  But the "Foot-Up" only addresses foot-drop, not balance. Can a flexible brace serve to transfer sensory information that we have lost from our feet to sensors we still have higher in the calf?  My head is working hard.  I think I need to check this out! 
Recent highlights:
  • Dec 1 - A Chair Yoga class
  • Nov 3 - Meeting highlighted by a harrowing tale of medical treatment
  • Sep 8 - 34 attended! Presentation on Total Body perspective on Pain
  • Aug 8 - Intro to PN for new members (we had 11!!)
  • July 18: Annual Pot Luck Picnic at Peter's house
  • June 2: Presentation on Amyloidosis, a rare cause of PN. Wrote letters to Washington Post asking for coverage of PN & Neuropathy
  • 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.  

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 details about our calendar.
  • Op Stuff page has discussions about our operations, including money and operational issues we need to think about.
  • The MemberStuff page is on hold while waiting for WEBS to fix its login process.
  • 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 put your contributions to good use.

Membership - In January and February of 2018, I conducted tests of the "membership feature" of this site, but stopped when WEBS developed its login problems. The sub-pages of the Op Stuff page document how it might work. 

New to learning about Peripheral Neuropathy?

The Foundation for Peripheral Neuropathy has an introductory <brochure> that hits all the right notes. Come to our meetings. Or email us <dcpn.group@gmail.com> 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. Read and comment on my blog post on the survey results
What Makes the Group go? 
- Attendance - when you come it is all worthwhile.
      You bring mutual help, perspective, experiences, research, fun and sharing.
- Labor
  - Steve is constantly working to line up speakers, bring in news & talk/email others 
  - I (Mike) try to keep the techy stuff going, while making I-Know-It-All presentations.
  - Lynn & Robert wrote that great Post article & have served as informal advisors
  - Lou, besides being President of FPN, provides frequent help to us
  - Strong folk who come early for setup or stay after for take down
  - Several members are active in helping in a wide variety of ways, especially advice
  - We need more help:
      - An Organizer to bring some structure to our efforts
      - A Treasurer: help with money matters. 501c3 is out of reach without one
      - Advertising: Place ads for meetings in local papers
      - Slippery-Slopers: people willing to do a single specific task. "But just this one thing!"
      - Welcomers: greet people, help sign-in
      - Telephoners: call those without email, give reminders, comfort or check on folks
      - Drivers: We are a long way from some & some just cannot come alone
      - Leaders - folks to start new groups, perhaps starting in local restaurants or churches
- Food makes any meeting more fun and productive. Kudos to those who bring stuff
- Handout printing. Some folks have helped with that expense
- Pass-The-Hat money. Needed when we rent equipment or print stuff.

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
  • Membership -  [On Hold for now]
  • This Web Site
  • Sign-Up Genius
Last Update: Oct 29, 2018
Recent changes to this site:
10/28   Calendar and event updates, 
7/9   Washington Post article notice
        Expand discussion of Drop Foot treatments & Ossur FootUp <Details page>
Late January - changed our site name to https://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.