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 GroupMetro DC

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The Peripheral Neuropathy Support Group of Metro DC

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: 4/2/2020)

On April 4th we are meeting virtually using ZOOM.


Program starts at 2 PM. Some videos on PN Pain.


Dignified discussion (if we manage to do it right - we're learning too!)

Talking lasts until the last two people get tired of talking.


Never used Zoom? Join us early (between 1 PM and 2 PM) to test your setup and learn how. If you contact us now, we may have time to teach you individually.


if you know Zoom already contact us. We could use help running things.


For details about using Zoom and how to join us for this meeting:

Send us a direct email <dcpn.group@gmail.com>
                      OR
Use the Following Form to Send Us A Message  Note:  Both go to the same mailbox.
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For details about past meetings, use the "Details" menu item above.
Yes, We Meet Monthly
When? Usually: 1st Saturday @ 2 PM
Where? Usually: Fairfax County's
            Mason District Gov. Center
            6507 Columbia Pike
            Annandale,
                       <Directions PDF>
Occasionally: other times & places (check Calendar below & Future Meetings page

6507 Columbia Pike, Annandale VA

Our Group is Near a Cliff.


A Leadership Cliff

 

2019 was a year of extraordinary growth for the Annandale Group. A huge increase in volunteers, attendance and followers.


Now it risks collapse. This reflects an inherent danger:

   PN Support Groups can fail when their leaders must scale back.


We’re showing some classic symptoms. But failure can be avoided and growth resumed.


Please (PLEASE) watch this 14-minute video about the nature of what we are facing. And how this challenge can be overcome.


    https://www.youtube.com/watch?v=AC6z7y7W81I


Annandale volunteers are actively working on a transition. Seeing this coming, a group of us have been working for many months to craft a broad, long-term approach. One that maximizes and stabilizes growth. One that can extend our progress to support many more people.  In February we sent email appeals to our membership to come to organizational meetings of "The Network". The few who came immediately volunteered to help. We need more to come.  We need everyone to understand the problem. And a solution.


    If on our mailing list, please respond to the next appeal.


    If just visiting this site, please use one of the contact methods shown on this page to inquire about how you can help. Or respond to the appeals recently sent by Steve and the volunteers who have been helping him.


Mike Foxworth, David Bush and Judson Vaughn

CALENDAR 

Last Meeting

March 7 - Chantilly’s Driver Rehabilitation Center of Excellence (DRCE)

Is your foot a little numb?

When driving, ever get the impression that foot movement from Gas to Brake was a bit off?

Ever hear about someone with a great driving record having a "driving accident"? We have.


Ever wonder how someone learned “hand controls” after driving for a lifetime without them? We did.

 

The DRCE crew came and gave us information about the hand controls. They also brought some hand-control cars to try out. Much of  the discussion was about the legal aspects of licensing in the two states and DC. All jurisdictions require that you modify your driver license to use hand controls.


Virginia is "self report" but if you get stopped and are using the controls without the license modification you must immediately get evaluated by an agency (like DRCE) AND have a driving test to update the license. You could have your license suspended if there is a delay.


Maryland and DC are "mandatory report." You MUST approach the licensing agency and tell them about the situation. You must get evaluated before you modify the car, get trained and take another driving test. DRCE is legally obligated to notify Maryland before making any modifications on a Maryland/DC car. You could have your license immediately suspended if you don't follow this process.


In addition, DRCE (or any hand-control vendor) is legally obligated to report to any jurisdiction if they see that a driver is unable to safely operate a car without hand-controls.


They indicated that most hand control installations cost around $1500-2000. The evaluation and training cost roughly similar but can be much more depending on the circumstances. 

Many people are tempted to buy a new car prior to making such an expensive modification. And many auto companies will give a discount if you have the new car modified. HOWEVER, they URGE us to come to them (or another hand-control vendor) prior to buying a new car. Physical aspects of the driver or car may make a modifying a particular car unsuitable for that driver (such as being too tight a fit).
Last "Big" Meeting
Dec 14 - Health Psychologist Dr. Sarah McQuide was our speaker.  "Back by popular demand", Dr. McQuide took us up a slightly different path than her first visit 2 years earlier.  Instead of going through a structured point-by point approach (see <the neat handouts> she used then), she went after the BIG issue: our attitude
She asked us to imagine how we would respond to an unwelcome guest. My take:
He came uninvited. 
At first, he merely annoyed us. Then he started breaking things.
When asked, he doesn't leave.  Evicted, he just comes back.
With new locks installed, he manages to get back in. 
When we stop to look, we're stung by more signs. 
The beautiful things that were so useful and comforting.
"No! Not that! I loved it so much! How can I get it back?" 
"What do you mean it can't be fixed?"
We fix and paint and redo things.  Soon, they all need more help.
And we get so tired.
The anger we feel when those around us cannot understand. Or fix. 
The confusion as plans lie broken and out of reach.
The guilt we feel as we can no longer help those whose house lies broken too.

PN is like that
So what do we do?
We do the best we can. It's OK to yell, cry, and complain. It's OK to spend money & time we don't have trying to fix things. And feel sorry for ourselves and those who are damaged helping us.
Some.
But none of that is going to drive that guest out.
Our job is to live.  To enjoy life.
To sing along with <Enjoy Yourself, it's later than you think> [skip the YouTube ads]
To give thanks for the opportunity to give thanks.
Attitude trumps PN.  Nothing else will.
 

Our First Big Outreach Event!

As an almost grown up support group, we planted our flag in the name of PN!

Our support group members manned tables at


The Beacon 50+Expo

Sept 22 @ Springfield Mall

Oct 6 @ Silver Spring Civic Center


This annual health fair was the first time our group stepped outside the warm confines of our comfy meetings. We were Very Brave. We figured we would hear lots of:

"Peripheral Neuropathy? What's that? How do you say it again? Is it rare?"

But, you know, that's NOT what we mostly heard.  Instead, we were swamped with 

"That's what I have. Tell me more."

Or substitute "My wife", "My Father", etc. for "I"

It's hard to say exactly how many people stopped to talk, but we had hundreds of handout copies and had to dash out and get more printed. 35 people trusted us enough to give us their contact info.

Remember, there are about half a million PN patients the DC area.

And another half million directly impacted caregivers/children about to be hit in the face.

 There can be strength in those numbers - if we mobilize them.

Other Future Events:

  • surviving Covid-19
  • Zoom online meetings until this virus thing stops.

2020 "maybes":
- Diabetes Foundation speaker    
- breakout sessions for patients and caregivers.
- breakout sessions for patients with severe pain
- presentation by a home health "insider"
- Discussion with economist on health insurance policy

Recent Past? see <Details page

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.

  • Apparently the Riderwood retirement community has sponsored a new group. While this group is limited to occupants and guests, we are encouraged and hope to be helpful. We hope other local retirement communities will follow suit.
  • 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.
  • FPN has a lengthy "how-to" manual on support groups <PDF>. There is a shorter manual <PDF> 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.
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 the scientific uncertainty, the lack of consistent medical guidance & lack of public awareness.

       At our June 2018 meeting the members wrote supporting Letters to the Editors. Don't know if those helped, but that's the kind of bit-by-bit action we can do. 
Recent highlights:
  • 2020:
  • Apr 4 - first Zoom meeting - A "test"
  • April - Covid-19 & we slow to a crawl.
  • Mar 7 - Car hand controls: legal and practical aspects.
  • Feb 8 & 28 - org & planning to expand to Herndon/Loudoun area via Network
  • Feb 22 - 2nd PMDoS: update improvement plan,discuss Network concept
  • Feb 1 - Presentation on "Network" concept. 1st "caregiver" breakout.
  • Jan 4 - "Normal" meeting - after many speakers, got to talk!
  • 2019:
  • Dec 14 - Health Psychologist - mentally accommodating the reality of PN
  • Nov 2 - Fitness Coach and exercises. Plans for "Network"
  • Oct 6 - OUTREACH - manned tables at Silver Spring Beacon Expo
  • Oct 5 - Major PN researcher, update on research status (another big crowd)
  • Sep 22 - OUTREACH - manned tables at Springfield Beacon Expo
  • Sep 7 - Leading neurology teacher - diagnosing PN (big vol effort & big crowd)
  • July 20 - Pot Luck social - survey on topic interests
  • June 1 - Fall Prevention specialists.
  • May 4 - Elder care planning for issues relating to housing and legal support.
  • Apr 6 - Reg Mtg with report on local organizational efforts and National lobbying
  • Mar 2 - Reg mtg with pitch about Volunteering
  • Jan 19 - 1st PMDoS: meet w/ PM specialists, develop plan for improvement  
  • Jan 5 - Reg mtg with video & discussion about applying artificial sensor tech to PN
  • 2018:
  • 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.
  • 2017:
  • 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".  


This Winter, the Foundation began a lobbying campaign to get the US Senate to "allow" the DOD to "consider" research proposals on PN.   DOD has a research program on health that is separate from NIH. PN is not, and has never been, on the list of topics the DOD could even consider for funding!  All the foundations and support groups had their members write messages to their Senators. Our lobbing group says those efforts were quite helpful. This effort is the kind of action that is needed to chip away at PN's persistent invisibility. We are watching to see if this ongoing effort bears fruit.

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
Recent changes to this site:
May 2018
March - May 2019  Calendar and event updates, 
7/9/18   Washington Post article
        Expand discussion of Drop Foot treatments & Ossur FootUp <Details page>
Fall 2017 - made our site more visible on Google & other search engines.
                Search for "neuropathy support group dc"

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.