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: 7/7/2019)

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.
Yes, We Meet Monthly
When? Usually: 1st Saturday @ 2 PM
Where? Usually: Fairfax County's
            Mason District Gov. Center
            6507 Columbia Pike
            Annandale, Virginia 22003
                       <Directions PDF>
Occasionally: other times & places
(check Calendar below & Future Meetings page)
6507 Columbia Pike, Annandale VA

CALENDAR 

July 20th Pot Luck picnic! Want to join us?  Use the contact form below and we'll send you an invite.
Next Meeting
Aug 3rd - We'll have a regular meeting.  Share info and talk about PN and life with PN.
                
Plus
  - We're working on some videos. Have some draft versions available to critique?
  - Status updates & discussion of group organization improvements & plans
  - Efforts to get Senate research money
Other Future Events
  • Presentation by Dr. Perry Richardson, neurologist at GW University (Sept 7)
  • Presentation by Dr. Gordon Smith, Professor and Chair of Neurology, VCU, Richmond, Va (Oct. 5)

2019 "maybes":
- Regular meeting in November
- Diabetes Foundation speaker   - AARP  - breakout sessions for patients and caregivers.

Recent Past? see <Details page
Last Meeting
2019-June-1 - We had Two speakers from Inova Health Systems.  Linda Watkins is the Injury Prevention Coordinator from the Trauma Center of Inova Fairfax Hospital. Dr. Melanie Bush, is a Doctor of Physical Therapy and director of Inova's Long Term Care Coordination Council.  They discussed fall prevention and led us in a fun exercise routine to prevent falls. We loved the routine's Zumba music!
 
With PN, the quickest route to disability is a FALL!  Via disability, PN becomes premature death.

Their presentation's main points: <see PowerPoint PDF>
  • Don't fool yourself! If you're on the floor when you didn't intend to, You Fell!
- when the someone asks "Have you fallen recently?", be truthful with them (and yourself)
  • With PN, Falls are a BIG DEAL
- Broken Hips - 95% caused by falls. 50% dead within 1 year. Vertical good - Prone bad.
- Traumatic Brian Injury (TBI) - falls are biggest cause. (Playing football is way down the list)
- Falls represent 1% of all deaths in the US and PN (alone or co-morbidity) is a major factor
- Trends are bad: 
     * PN patients are older
     * US Population getting older (lower birthrate & lower immigration)
     * Given above, money cost expected to grow from $50B to $68B in 5 years (2015-2020)
     * 75% paid by taxes - in a county with a $1 Trillion budget deficit!
     * Money costs underestimate the cost in lost wages from families that care for disabled
  • Fear of Falling - can cause you to stop activities that bring joy and health
- legs weaken, falls increase (not decrease), loneliness, depression
  • Exercise and Movement are key
  • See pages 11 through 22 of <PowerPoint PDF> for details about risk factors and what you should do about them.

-

Dr. Bush also talked of the difficulty patients are currently have obtaining in-home exercise training by Physical Therapists.

These changes are based on "interpretations" of policy by the Physical Therapy provider, who must seek reimbursement from Medicare. The provider will not provide the service unless they are confident that Medicare will agree to pay. Every time Medicare "gets tough" about approving PT treatments (as they are in 2019) the PT companies run scared.  They are tempted to refuse to initiate treatment if the PN patient is not "Homebound".  Most PN patients with enough balance and strength to benefit from an exercise program are not Homebound.  See the <blog entry> on customized home exercise.

  • Medicare covers skilled therapy services—including ... outpatient therapy services, ,,,, if the services are “necessary to maintain the patient’s current condition or prevent or slow further deterioration.”
  • Medicare will reimburse therapists for “the establishment or design of a maintenance program,” “the instruction of the beneficiary or appropriate caregiver,” and the “necessary periodic re-evaluations...of the beneficiary and maintenance program.”
  • Medicare Policy: "The services for teaching and training would be considered to be reasonable and necessary prior to the point that it became apparent that the teaching or training was unsuccessful, as long as such services were appropriate to the patient's illness, functional loss, or injury."

The principle is clear. In-home training is appropriate. Unfortunately, there is nothing simple and clear about the approval process. Hence, the patient and his "advocates" (typically, the primary care doctor) must jump though hoops to get the customization process approved. 

Bottom Line: Lace up your jumping shoes.

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.