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)
Feb 1 - A Semi-Normal meeting. EXCEPT
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"
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.
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.
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
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.
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!.