No Cure No "Race for a Cure" But Hope, Advice, Info, Mutual Support & Being Heard? Yeah, We got that.
Past meeting details and materials |
Over the years we have collected a bunch of neat stuff.
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. Cynthia took us through a famous sequence called "The 8 Brocades." You can access videos of standing versions on her website <https://www.theartofqi.com/8-brocades/>. Her website also has an "about" page, where you can read about the extensive educational process she has used to become the astounding person we saw. Cynthia usually works out of the Sun & Moon studio in Fairfax City; their <website> has schedule information. As a warm-up, Mike made a 5-minute pitch on the importance of choosing an exercise mode YOU ENJOY in order to ACTUALLY DO the exercise. See his <blog post> on the subject.
2018-Nov-3 We had a normal support group meeting in Annandale. 20 in attendance with three new patients and their caregivers.
2018-Oct-6 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 attendees.
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 on the GeoFit form are recognizable. Mike Foxworth briefly discussed the unique features of PN’s Awareness issues <PDF>
2018-Sept-8 We had 34 people, many responding to the Post article! On one hand, that was GREAT. On the other hand, it was too many people for everyone to have much time to talk. Mike presented some recent research results relating to Chronic Pain. [Will post once speaker notes are ready] {Top} {2018} {Index}
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 are be used to classify types of neuropathy (most types are 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. There are many types of amyloidosis. Each one causes the byproducts of the immune system (amyloid) to be incompletely broken down so they accumulate in bad places. In the brain it is implicated in Alzheimer‘s. But they also accumulate in and around peripheral nerves – in other words it can cause PN. The rare kind Carol’s company is fighting almost always causes neuropathy, frequently PN. Carol works with support groups as part of her job, was in town for a conference and offered to come by and talk about genetic diseases, the diagnosis challenges of amyloidosis (especially rare ones) and about working with support groups and caregivers when dealing with participation in clinical trials. {Top} {2018} {Index} The amyloidosis website echos data from The Alliance for Caregivers that has interesting statistics on caregivers (especially for rare conditions):
2018-May-5 Members and caregivers (26 in all) got rocking and moving and talking when Terry Drew and Angela Lilley (home visit specialists in Physical Therapy and Occupational therapy, respectively, from Capital Home Health in Leesburg) came to get us up and going.
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. 2018-Mar-10 FPN sponsored a Patient Conference at DC’s Sibley Hospital. Reservations for attendance were open to the public and people came from all over he East Coast. There were a number of presentations about PN by researchers from Johns Hopkins. One result: offers from volunteers to participate in the PN Research Registry have increased dramatically. Including several of our members, Mike is being evaluated (which means, I guess, there is no insanity exclusion).
2018-Mar-3 Mike went through an updated version of his presentation on the science behind how PN impacts our balance and muscle strength. Addressed how and why exercise can help. Recommended for those who wonder “Why Am I Losing My Balance?“. Our Pass-the-Hat collection was enough to pay to rent a projector for $50 and print some handouts. <Here is a PDF of the presentation, with updated speaker notes>. If you are interested in a copy of the original PowerPoint, contact us at [email protected] 2018-Feb-3 We got a BUNCH of new folks, most of whom had read about the group in The Golden Gazette. We focused the meeting on mutual support. We got more Gazette-referred people in May, so Steve is thinking about trying to contact some other local papers. Really, we could use some help placing updated ads in local papers.
{Top} {2018} {Index} 2017-Dec-2 Let’s learn to talk about this!
Dr. Sarah McQuide, a health psychologist from Baltimore guided us through practical aspects of living, thinking and talking about our experience with PN. Dr. McQuide wants us to grab onto good thinking and good talking and fend off the approaches that make bad things worse. Dr. McQuide is the psychologist with a clinical team of neurological specialists from the Berman Brain and Spine Institute that works at Sinai Hospital in Baltimore (see their Brochure) Using these simple, clear handouts, she discussed the psychological aspects of having a chronic condition like peripheral neuropathy, coping mechanisms, when & how to talk to others about our conditions, how caregivers can help, and the importance of caregivers’ psychological health maintenance.
The following slideshow tries to make a main point: When Body and Brain problems appear in tandem, both must be addressed to cure either. Dr. Kaplan introduced us to the concept of “brain inflammation” to us. To see a recent example of how failure to think in these terms can damage us, check out the horror story we heard at the Nov 2018 meeting
Important distinction: Chronic sensation versus Chronic Pain Syndrome.
Second: Her background equipped her with a rare ability to address our questions. Before joining Hopkins as coordinator of the PN Research Registry, Simone spent more than 20 years helping NASA astronauts (super-healthy and smart but not necessarily introspective about their health) understand complex aspects of human biology. Their “understanding” was vital for NASA’s scientific research goals.
During her <Presentation PDF>, Simone patiently accepted and answered a wide variety of questions, honoring both question and questioner, threading together accurate responses using simple language. A rare gift honed on astronauts’ hard heads. We hope to have her back.
2017-July-21 Our Pot Luck party at Peter’s house: we had fun and discussed a proposed approach to increasing and maintaining public support for progress on PN. Mike Foxworth, in his role of disturber-of-the-peace, made a presentation on something he (rather grandly) calls <The Neuropathy Network Plan PDF>. The key ideas:
2017-Jun-1 Did the Treatment help? How do you know? Measuring via Quality Of Life. 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. But we talked about it anyway. We hope to reschedule. In any case:
2017-May-6 We discussed the results of our survey. In this blog post, the results indicate that our members were most concerned about muscle weakness and balance.
{Top} {2017list} {Index}
2017-Mar-4 Preliminary results of study on effects of diet & exercise on PN symptoms. Two young 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) discussed 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. I got mine installed in 2018 and am slowly adapting to their use (starting with use of the brakes); currently I still drive OK without them. (By the way: get an optional steering knob – steering is complex without one.)
There are other hand-control vendors. We’ve not had an opportunity to meet with them. If any of you have used them, please use our contact form to let us know of your experience.
2016-11-5 VCU research neurologist Dr Jason Wong answered a LOT of questions <Notes PDF>. We hope to have him back some day.
His response to my question: I’ve always found it puzzling that PN seems to continue even though its “cause” is no longer present. I used to be pre-diabetic but now am not – PN started back then and continues now. It seems mysterious. Is PN like going over a cliff – one step more and all is lost? According to Dr. Wong, this is a familiar story and a familiar belief. He thinks this belief is wrong. To paraphrase: “If nerves are dying, something is killing them. Remove the something (the cause) and the nerves will stop dying. They may never regenerate, but they will stop getting worse.” In his view, we often don’t REALLY know what the continuing cause is. Or, rather, we see an association but we don’t know what is going on under the covers. Not a global mystery. Mostly just ignorance about the grubby case-by-case details. According to this logic, since there are effective treatments for some cases that stop PN progression, there should be treatments for all the other cases, too. If we could find them. Even if the tests (there were LOTS of tests) do not show it, maybe my pre-diabetes or something is still there, thrumming in the background, continuing to kill my nerves. Maybe there is something going on that could be stopped (and PN progression halted) if our ignorance was not so deep. Or maybe some wonderful single discovery will stop all PN. 2016-July We had a Pot Luck Picnic (indoors of course – hot out there!) where we started a multi-meeting discussion of the following materials:
2016-Jun-4 Joe Trepenning, of Infinite Technologies (local provider, <Website>), discussed flexibility exercises to AVOID (or minimize) use of ankle braces to treat “drop foot“. Drop foot (<Described in this PDF>) is a common symptom of PN since the nerves/muscles in the feet and lower leg tend to die/degrade first. Drop foot is one of the most dangerous aspects of PN, because it risks tripping and falling. Braces to help with it are called “Ankle Foot Orthotics” (AFOs).
Insurance, like Medicare, will often pay for an AFO; they’re the standard “quick fix.” Expensive to Medicare because they are custom and need fitting. Cheap to the doctors because paperwork is minimal. The Medicare standard AFO is a completely inflexible piece of hard plastic that fits in your shoe and straps to your thigh. Joe said use of standard AFOs should be minimized or avoided, if possible, because of their downstream health consequences to your mobility, balance, gait and knees. Joe’s company, along with companies like Hanger, fits and sells AFOs. But he recommends physical therapy exercises be tried first or concurrently to strengthen the affected nerves and muscles. The PDF cited above describes some of these exercises. If an AFO must be used, he compared standard types (with a fixed ankle angle) to newer flexible kinds that are safer and allow walking to be somewhat more natural. Since Joe’s visit, we have seen references to other new types:
2016-Feb-6 Victoria Wood, a nutritionist & specialist in Functional Medicine <website> prepared and presented these materials on links between Nutrition and PN
She emphasized that nutritional supplements CAN have value IF they address SPECIFIC nutritional deficits for on-going medical issues identified by medical doctors. She was extremely critical of normal over-the-counter products both because they were not tailored for the problem (used wrong amounts) and typically used very poor or unknown quality (i.e. cheap) ingredients. She distributed and discussed a number of handouts:
in 2014 we:
We have also collected a number of other miscellaneous helpful items
Between 2011 and 2015 we had presentations and Question & Answer sessions with a number of area neurologists and researchers. Steve Klitzman made notes on these meetings and we have some presentation copies, below. I hope to put together a joint document integrating this information, when I "get a round toit".
2015-Jun-4 Dr. Amy Stone, a neurologist with the Neurology Center of Fairfax Virginia, led a Q&A <NotesPDF> 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>*. He provided a 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. Lindsay Zillox’s analysis of treatment options for PN and related pain <PresentationPDF> {Top} {2015list} {Index} |
2018
2017
2016
2015 & Earlier
Topical Index
What is PN, anyway?
Living with PN
The Science
PN – Pain Treatments
PN & Chronic Pain Syndrome
Exercise & Physical Therapy
Awareness & Support Group
Caregiving
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