Past meetings and materials
Over the years we have collected a bunch of neat stuff.
We got some management help in January
The Problem: Our group has steadily expanded. We have focused on improving the relevance of our meetings while trying to help all those who contact us via phone or email. We've had more speakers and better information. We would like to be better at what we do, but it's been hard to know where we should focus our efforts.
The Treatment: Our support group was examined by some project management specialists. Member David Bush, an experienced Project Manager and really-focused-guy, got us an invitation to the Project Management Day of Service (PMDoS). This service project by professional project managers is designed to examine local non-profit organizations and help them improve their results.
Their Recommendations for Our Near Future Focus:
2019-May-4 - Heidi Garvis, a specialist
in Elder Care planning with Caring Considerations, made a presentation <see her PDF> on elder care planning and issues relating to ousing and legal aspects.
PN is mostly an Over-50 condition. 50 is not "old" but PN speeds the aging process for many. Besides, some of us really ARE old (at least physically). Heidi's presentation was heavy on ways to add maturity to age.
The group asked a lot of questions. We ran out of time long before we ran out of questions.
Some Key Points
2019-April-6 We had a normal go-around meeting.
- Keep a journal of symptoms.
- Make a written list of concerns, give the doctor a copy and talk about important ones first.
- Ask questions, especially about words or things you don't understand.
- Be honest, don't minimize.
- Share your knowledge, including what you or others have learned about your conditions. (Including the existence of this group! Handout a copy of the group business card!).
2019-Feb-2. Life intervened for Steve and I. Fortunately, new member Susan Tipton, an experienced discussion leader from her professional life, agreed to lead the meeting. It was a smashing success.
Even more eye-opening, Susan made extensive notes about the discussion highlights and generated a report for us. While Steve and I try to do this, we fail to follow up as much as we would like. There are relevant time constraints, not to mention our active involvement (i.e., we both sometimes talk too much to take good notes).
Here are a few of her observations:
2018-Dec-1 Our Go-To Yoga/Tai-Chi angel, Cynthia Maltenfort, came to give us an inspiring lesson and introduction to Chair Yoga. Folks
in the above picture have a variety of physical problems and it really
helps to have a teacher who has used her knowledge and craft to deal
with her own physical challenges. Maybe it should be enough to be TOLD
to do something. For most of us, it usually isn't. We could all feel
Cynthia's "I've been there" conviction that this stuff really works.
We're a support group - empathy is an essential element. It doesn't hurt
to have a friendly and technically proficient teacher in the bargain.
And the mesmerizing sounds and incense at the end left us all in a
relaxed and joyful mood.
People with PN (as patient
or caregiver) have had to adapt. Use of the word "chair" in "chair
yoga" signals that there remain viable paths to wellness even in the
storm called Peripheral Neuropathy. This afternoon I will be attending
my first chair yoga class at our local studio.
Opinion: Therapies are a frequent topic at our meetings. Unlike most "new" therapeutic offerings with evaluation periods measured in months or years, Far Eastern practices such as Yoga, Tai Chi and acupuncture rest on testing periods measured in millennia. Western medical & research approaches, developed over the last 600 years, have struggled to separate wheat from chaff in collections of medical wisdom. Many therapies are difficult to tackle with double-blind randomized controlled trials. Astrology, Voo-Doo and blood-letting have been rejected. Others, such as heart stents and arthritis scraping are teetering. Our ability to understand Eastern techniques like Yoga rests on our ability to understand the peripheral nervous system (PNS) and its interaction with brain and the rest of the body. That is the heart of the problem: Our knowledge of the diffuse PNS is relatively primitive compared to our knowledge of any other bodily system (including the brain). Our relative ignorance makes it hard to see HOW these Eastern techniques work.
Millennia of experience suggests we should keep looking and testing. With slim options, PN patients might want to volunteer first.
2018-Nov-3 We had a
normal support group meeting in Annandale. 20 in attendance with three new patients and their caregivers.
a harrowing tale of poor medical care using narrowly focused,specialists. Our member was in great pain, with a variety of problems.
Being loaded, over time, by her neurologists with increasingly
hard-to-handle pain meds. Faced with a recommendation to start an
opioid, she decided, on her own, to instead go gluten-free for two
weeks. All symptoms dramatically improved (except, of course, her PN
damaged balance). Doctor's response to this good news? "You should
probably resume taking the meds we recommended." What???
Take-away: It's difficult within Medicare to obtain high quality, diagnostic-focused primary care. When there is a clear diagnosis of PN, care can default to specialists who may not be trained and skilled at the broad approaches needed to detect concurrent issues like gluten sensitivity. This is exactly the insurance coverage problem the Kaplan book addresses (but does not solve)
Other medical people can be blind too: for another reason,
she spent a few days in a nursing facility. They refused to honor her
gluten-free diet and she was immediately back in pain. She is now doing
well, back on a gluten-free diet. Really LIKES the special bread her daughter
has found (No, I didn't get the name of the product.)
Broader Take-Away: We greatly benefit when you bring your stories.
LowLIght: Steve got mad at me when I dropped too deeply into my Debbie-Downer "The sky is falling" language. My wife wasn't there to punch me in the shoulder.
We met at
Floris Methodist Church in Herndon, VA. We met there last October also,
but had a larger room. 20 people crowded into the room (We did not
expect so many). It was a VERY lively discussion, with several new
Steve had an extensive Exercise for PN handout <PDF>.
He also distributed a fill-in form <PDF> from GeoFit that you can print to track your planned goals and activity. Most of the exercise names are recognizable.
Mike Foxworth briefly discussed the unique features of PN's Awareness issues <PDF>
2018-Aug-4 We had a semi-normal meeting. With publication of the Post Article we had many inquiries. We expected and got new people: 11 including 2 caregivers! We splurged on a projector rental and made a brief <Introductory presentation on living with PN> before getting down to the serious business of sharing, listening and being understood. Passed around a form (based on a widely cited 2013 article) to fill out that shows how basic symptom patterns can be used to classify types of neuropathy (most rare; the one labeled "Pattern 2" is the one most of us have). With one exception, everyone seemed to have garden variety PN. Pete brought goodies!
2018-June-2 We had a semi-normal support meeting. As we usually try
to do, we went around the room and folks shared their ideas, experiences
and frustrations. Peter endorsed his inexpensive TENS machine. But first, everyone wrote a personal letter to
the Washington Post in support of our campaign for a PN "Awareness
Article". We put a bunch in the mail. [Update: a week later the Post printed the article. Cause & effect?]
Then we had a
discussion with Carol Brooks, a genetics specialist coordinating
patient education for a company testing a treatment for a rare genetic version of amyloidosis. Update: 8/24/18 - FDA has approved use of the treatment.
Their website echos data from The Alliance for Caregivers that has interesting statistics on caregivers (especially for rare conditions):
2018-Apr-7 We had a Tai Chi workshop with Cynthia Maltenfort, an excellent teacher with Sun & Moon Studio in Fairfax City (Their Web Site) who focused on how Tai Chi can help us prevent falls and new exercises, all customized for PN. This was a PAID appearance: your Pass-the-Hat taxes at work! My Bias: in addition to being a gentle and clear teacher, Cynthia has the rare ability to face the class and SAY "left" while SHOWING "right" - the effect is magical.
Simone runs the Hopkins portion of the PN Research Registry (PNRR).
Personal Note: In her presentation Simone repeatedly emphasized exercise. As noted elsewhere on this site, there are no treatments for nerve death (numbness). Treatments for pain have results that are spotty and poorly understood, Perception of "pain" always involves higher brain processes, and the brain is not well understood (yet). For some, pain treatments,even adjusting for side effects, are worth it. In general, however, It is difficult to distinguish "relief" from "placebo". This leaves exercise as the only relatively well-supported mechanism for treating general peripheral neuropathy (and even that evidence is not ironclad). Simone urged me to
2017-Jun-1 - Our June 3rd Meeting that wasn't: Ever wonder why PN research progress is SO SLOW? Other than being the least-known, wide-spread, big-impact health problem in the US and having only tiny amounts of research funding, it also suffers from severe vagueness in tracking patient progress. Dr.Ted Burns, a Neurology researcher from UVa, has been helping to lead a multi-university project to implement a simple, cheap-to-use, but experimentally validated tool that YOU (the patient) and THEY (the doctors) can use to track progress (or lack thereof) as YOU try various treatments. Unfortunately, Dr. Burns became ill and was unable to come. But we talked about it anyway. We hope to reschedule. In any case:
2017-Mar-4 - Preliminary results of study on effects of diet & exercise on PN symptoms. Two U. MD coordinators of patient participation in the study also shared insights on how patient attitudes affected study participation and (hence) results. Will post report when released.
2017-Feb-4 - We filled out and discussed the new Quality of Life "quick assessment" form (see 2017-6-1 meeting, above)
2016-Dec-3 Lee Perry
of Driving Aids Development Corp (DADC) on adding hand controls to autos. We drove one
around the lot. <Their Website>.
Most ordinary cars can have hand controls added. The cost, which can be
modest, depends on the car and the choice of functions to be added. In
most cases, a modified car can be driven in both the normal manner (such
as by a caregiver or by a patient wanting to proactively obtain experience) or by using its hand controls. Mr. Perry holds many
patents and is one of the country's leaders in this technology. One of our members has DADC controls and is quite pleased. Two others are planning to get controls installed.
There are other hand-control vendors. We've not had an opportunity to meet with them.
2016-July We had a Pot Luck Picnic (indoors of course) where we started a multi-meeting discussion of the following materials:
2015-Jun-4 Dr. Amy Stone, a neurologist with the Neurology Center of Fairfax Virginia, led a Q&A <NotesPDF>*
2014 Presentation on the Virginia Assistative Technology program and some of the equipment available <PDF>*
2013-Dec-15 Hopkins researcher and
scientific advisor to the Foundation for Peripheral Neuropathy, Dr. Hoke,
presented analysis of research and the orphan status of our disease <PresentationPDF> (UPDATE May 2018: Dr Hoke also made a presentation at the March 2018 Patient Conference - I will try to get an updated version of his presentation.)
2013-Oct-12 Hopkins' Dr. Cornblath, a leading PN researcher, discussed PN and had Q&A <Notes PDF>*. Suggested text for appeal to Congress for more research funds <Sample RTF> More info on his website <Website>
2012-Apr-14 Georgetown's Dr. Sirdofsky discussed PN and had Q&A <Notes PDF>
2011-Dec-15 NeuroNOVA neurologist Dr. Zillox's analysis of treatment options for PN and related pain <PresentationPDF>*
Some other useful links
- Three introductory descriptions of PN from Cleveland Clinic, Neuropathy Assoc & NY Times <PDF>
- Presentation on Drop Foot exercises and NEMS <PDF>
- An often cited New York Times Magazine article on PN pain. <My Pain, My Brain>
May 5 - Elder Care planning
Apr 6 - Reg Mtg report on org and lobbying
Mar 2 - Focus on Volunteer Participation
Feb 2 - Reg Mtg led by Susan and Bob
Jan 19 - Project Management help
Jan 1 - Technology replacements for nerves
Dec 5 - Chair Yoga
Nov 3 - Reg mtg w/"horror story"
Oct 6 - Reg mtg. Awareness issues.
Sep 8 - BIG crowd! Discuss Chronic Pain
Aug 4 - Reg mtg, 11 new. Intro to PN
Jul 28 - Pot Luck at Peter's house. We're special - only day without rain for 3 weeks!
Jun 2 - Sharing, letter writing, amyloid & PN
May 5 - Home visits by PT & OT experts to customize exercise/living with PN
Apr 7 - Tai Chi Class customized for PN
Mar 10 - DC PN Patient Conference
Mar 3 - Presentation on muscle weakness
Feb 3 - Golden Gazette ad gets 11 new
Jan 6 - Canceled - too much cold & ice (for us)
Dec 2 - Psychology: dealing w/chronic illness
Nov 4 - Role of brain inflammation in diagnosis
of body/brain issues, incl. pain &
Oct 7 - Leader of PN Research Registry
Sep 9 - new FPN working group on Awareness
Jul 21 - Pot Luck Party at Peter's house.
"Neuropathy Network" proposal
Jun 24 - Tai Chi workshop in Fairfax City
Jun 15 - FPN meeting in Washington
Jun 3 - Regular meeting (Speaker was ill)
May 6 - Discussed our Survey results
Apr 1 - Speaker: Exercise with Chemo PN
Mar 4 - Speaker: patient participation in a
study of effect of diet & exercise
Feb 4 - Discussed PN Survey & new Quality
of Life "quick assessment" form
Jan 7th - (Canceled due to weather)
Dec 3rd - Test drove a car with hand controls