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: 1/25/2019)

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
An apology:  Mike Foxworth, who writes most of these silly things, was felled for most of October by a self-inflicted health issue. A combination of too little "core strength" exercising and too much sitting in front of a computer screen. That led to misadventures, a hospital stay (and bills) and redoubled pleas for forgiveness.

Has Mike learned his lesson? Well, some lessons fade and need to be relearned. He has a 30-min timer set on the PC. When it rings he gets up from the computer. Mostly.  He does his daily exercises. New "foot-drop" exercises seem to be helping his balance [Lie in bed and "draw the alphabet" with each foot. Yes, both upper and lower case!]  And he listens to and OBEYS his wife. Mostly. 

CALENDAR 

Next Meeting

Feb 1 - A Semi-Normal meeting. EXCEPT

  • Mike will make a Presentation on our proposed Network Group (see below)
  • With enough caregivers, we'll try a "Breakout Session" for Caregivers (just to test the mechanics, if nothing else)
-
At the November meeting Mike gave a brief intro to the Network Group concept. See his handout <PDF>
  • At the Feb 1st regular meeting we'll dig a bit deeper. Plans are getting firmer. We'll sketch our plans for helping form more support groups (California has 62) and increase PN advocacy.
  • We're holding a Network Group organizational meeting on Feb 8th at Floris United Methodist Church. We need to get an idea what (of all the many possibilities) we should try to do and who is willing to help. We'll talk in more detail. All are invited. We'll send/post When and Where.  
Last Meeting
Jan 4 - a "normal" meeting for us "normal except for PN" people.  We'd had many speakers. It'd been many months since we had a chance to get together and have a real talk.  So, we talked. And laughed. We had some new people come and introduce themselves. We, as a group, did our best to respond to each other's questions and suggestions. And we "heard" each other in a way that only a "community" can "hear".  We ate some snacks.
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 Event!

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

Our support group members manned a 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 some more printed. Roughly 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:

  • Organizational meeting for the new Network group (Dec. or Jan, date TBD)

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
Next to Last Meeting
2019-Sept-7 - Dr Perry Richardson talked about lots of things PN in the biggest meeting we have ever had!.  See the <details page> for more on this visit.
 

-

July Topic Interest Survey

We had the party goers pause talking and eating long enough to fill out a survey about their topic and speaker preferences. More topics were added during the discussion.

  • First, We apologize for omissions and overlaps in the topic list. We tried.
  • Topics marked with * were added during the discussion
  • We used advanced mathematical mumbo-jumbo to calculate the relative weights we show (i.e., grains of salt suggested). 

The overall rankings seem to make some sense. Some topics on the original list got virtually no votes and are not shown. But individual responses were all over the map, so none of the topics shown should be rejected out of hand. 

 

75 - Staying mobile

66 - What will happen to me?  forecasting the progress of my health.

57 - Dealing with decline

56 - * Traveling with PN

51 - State of the science – status of research and treatment of PN

40 - * Psychological strategies for coping with PN and its losses

35 - What family, friends, employees/employers and doctors need to know

34 - Small fiber & large fiber PN: what’s the difference and does it matter?

33 - Walking about: braces, robotic devices

32 - Steps to create and modify a personal exercise program

30 - The nature of lobbying for PN

30 - How to make our support groups work better

27 - hand controls – technology

26 - Using a gym

25 - Why exercise – the under-the-hood logic

25 - How to organize our group(s) to be more effective.

24 - Caregiving activity

23 - Proper use of gym equipment for PN patients.

21 - Psychology of caregiving

20 - Medicare restrictions on Physical Therapy

19 - Types of PN

18 - Dealing with insurance companies, including Medicare

17 - How can we measure “progress” in our exercise program?

17 - Grassroots organizing for PN – what can be done and how to do it

16 - Working with a personal trainer.

15 - * using empathy and love with PN

15 - Home Health care – basics

14 - Dealing with the economics of gyms, personal trainers, exercise classes

14 - Home modifications

13 - Walking: canes, hiking poles, walkers, rollators,

13 - * How to get better sleep

10 - * Spiritual and religious aspects of living with PN

  8 - The PN Support Network concept.

  8 - * Shoes and podiatry

  7 - Home Health care – making your needs and their incentives align

 

Some topics we forgot to consider. Do better next time. Maybe.

  • Pain meds
  • Chronic Pain management
  • Home layout & downsizing
  • Nutrition
  • Tracking/measuring progress of the disease
  • doctor training and education on PN
  • hands-on exercise classes (Tai Chi, yoga, Silver Sneakers)
Former Indiana Sen. Richard Lugar died April 29th. He died of CIDP, a form of Peripheral Neuropathy.  Sen, Lugar was a well-loved, respected and effective public servant. After leaving the Senate in 2013, he remained active in many other areas.

Neuropathy has stolen away so many giants.

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.
Suggestions/Questions?
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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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:
  • 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 5 - Reg mtg with video & discussion about applying artificial sensor tech to PN
  • 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".  


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.