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:
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.
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
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.
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"
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.
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.
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.
This is a link to the Clinical Trials portion of the Foundation for PN website. On that page is a link to the "Antidote" site that will
We want to have useful blog posts
But, so far, we have only done a few. Anyone want to volunteer to write a Blog? You can add comments -- but we need interesting posts!.